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Budget-Strapped Montana Will Stress-Test Trump’s Medicaid Work Rules

Katheryn Houghton — Fri, 29 May 2026 18:30:00 +0000

Montana will soon test whether cash-strapped and strained state health departments can carry out federal Medicaid work requirements without ending coverage for eligible adults.

On July 1, Montana plans to become the second state after Nebraska to make Medicaid enrollees prove they’re working to keep their coverage. That’s six months ahead of the federal deadline for states to implement Medicaid work rules for millions of enrollees.

That date is also the start of a new state budget year, as well as the deadline for Montana health officials to climb out of a previous Medicaid-driven spending deficit. Montana lawmakers underfunded the health agency when they set the state budget last year — before congressional Republicans passed President Donald Trump’s One Big Beautiful Bill Act. Health policy analysts say the state’s budget crunch is a hint of the challenges to come nationwide.

That’s because the federal spending law requires states to check every six months whether millions of Medicaid enrollees work, go to school, or volunteer at least 80 hours a month, or qualify for an exemption. Those checks will take time and money. Simultaneously, the law is expected to reduce federal Medicaid spending — the largest pool of federal funding for states — by nearly $1 trillion over 10 years, shift more food assistance costs to states, and add tax breaks that could hit state budgets.

“States are the ones that are gonna have to do the dirty work of implementing cuts,” said Joan Alker, a Georgetown University researcher focused on health coverage.

Part of Montana’s proposed budget fix is to stall rate increases for healthcare providers that were due July 1. Clinicians told me they already struggle to afford hiring staff amid growing waitlists for care, which they blame on low Medicaid payments.

Meanwhile, there are some red flags in the state’s Medicaid data from recent years: People often face long waits to access public assistance, and many can lose coverage at renewal time because of paperwork issues.

All these problems reflect a national challenge to connect people to care through strained public assistance programs. Our reporting has long shown how states have struggled to process Medicaid applications.

“Our concern is, is the department ready?” Jean Branscum, CEO of the Montana Medical Association, said of the state health agency. “Does the capacity exist for all this to be done right and ensure that patients don’t pay the price?”

State officials have said they’ll scan existing data to try to automatically confirm whether people meet the work rules. And they’ve been building up their public assistance team for months.

But they’ve had to wait on unanswered questions from the federal government that are key to exempting especially vulnerable people from the incoming rules. And now, they’ve got a lot more work to do with less money.

Montana Hurries To Adopt Trump’s Medicaid Work Rules Amid Budget Woes

The state is ramping up to implement the federal work requirements six months ahead of the deadline. But Montana is one of several states already struggling to pay for health services.

By Katheryn Houghton May 27, 2026

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Cheaper, Alternative Health Plans Are Having a Moment, but Critics Urge Caution

Sarah Kwon — Tue, 26 May 2026 09:00:00 +0000

When Melanie Miller saw that her health insurance premium payment was set to nearly triple to $914 a month this year, she stopped shopping on the Affordable Care Act marketplace.

The 59-year-old retired teacher, who recently moved from Ohio to Michigan, now pays $341 a month for a pair of plans, one that covers routine and urgent care and another that pays fixed amounts for hospital stays. Neither meets federal standards for comprehensive coverage.

Though she practices yoga and is healthy, Miller said she still feels “vulnerable.” If she lands in the hospital, her plan pays a flat $2,000, a fraction of the of an average hospital stay.

“I don’t gamble. But I may as well,” she said. “This is gambling.”

Congress’ decision late last year not to extend enhanced marketplace tax credits has boosted the appeal of alternatives to comprehensive insurance — plans like Miller’s, which have lower premiums but don’t meet ACA standards for coverage or consumer protections. Unlike plans sold on the exchanges, these options — some sold by major insurers, others by small companies or nonprofits — can deny claims with few or no legal rights for consumers to appeal. The plans are not required to cover “essential health benefits,” such as preventive care, and can impose annual or lifetime caps on benefits.

There is debate over whether these options help or harm patients. Consumer advocates dismiss them as “junk insurance,” while proponents say restricting alternatives to pricey marketplace plans risks driving up the number of uninsured. Some states, including Kansas and Florida, and the federal government itself have eased regulations on such plans or created incentives to join them, while other states, including California and Massachusetts, have tried to deter enrollment in alternative insurance. Those regulatory guardrails, however, are now being stress-tested as premiums blow out household budgets.

Alternative insurance takes many forms, including short-term policies, which were designed to bridge temporary gaps in coverage and often exclude preexisting conditions, and fixed-indemnity plans, which pay a flat rate per service regardless of how high costs go and are intended for supplemental use. Arrangements in which people pool their money to cover one another’s bills, including faith-based “healthcare sharing ministries,” also provide a cheaper alternative to the marketplace options. Because they are not considered insurance under federal or state law, they are not legally bound to pay for even .

Enrollment data for alternative plans is mostly confidential, but several indicators point to shifts in the market. Recent estimates suggest marketplace enrollment from 2025, and a of people on the exchanges last year found that 5% switched to private, nonmarketplace individual coverage, including plans that don’t comply with the ACA. Covered California, the state’s marketplace, plans to survey former enrollees to find out where they went.

Insurance industry insiders also report that, amid the expiration of subsidies, alternative plans are making a marketing push. Colorado insurance broker Samantha Albritton said that before ACA open enrollment, she saw more marketing from fixed-indemnity plans than in previous years. One healthcare sharing plan, Zion HealthShare, had more than 75,000 members in February — a 50% increase since last June, it said in a statement.

Critics of these alternative plans say the major issues occur when people use them as primary insurance and don’t realize the coverage is inadequate until they need it most. “Humans have bodies that can fail them,” said Amy Killelea, an assistant research professor at Georgetown University’s Center on Health Insurance Reforms.

A Premium Spike Drove Her From the Marketplace. An Alternative Left Her Exposed.

Melanie Miller, 59
Harbor Springs, Michigan

To avoid a $553 monthly premium hike this year, retired teacher Melanie Miller replaced her Affordable Care Act coverage with two alternative plans, one that covers preventive services and another that pays fixed amounts for hospital care. She considers her limited hospital coverage a calculated risk given her good health but is now weighing whether to drop the preventive care policy, given her struggles to find in-network providers in her area. “I have not had a good experience with it,” she said.

Killelea and other health insurance experts say that the fine print on these plans can be difficult to parse and that enrollees don’t have the protections of traditional insurance to fall back on. A found that after reading a summary of a sample short-term policy’s benefits and a disclosure that the plan was not ACA-compliant, only half of participants understood that prescription drugs were not covered.

When Jade Ramsey was 24, she declined insurance from her employer due to the cost of the premiums. After experiencing fatigue and unexplained bruising, she sought low-cost coverage from Southern Guaranty Insurance Company through a policy similar to a fixed-indemnity plan.

Two weeks after enrolling, Ramsey, who lives in Arizona, was unable to walk. An emergency room visit led to a six-day hospital stay and a $143,823 bill in 2021. She was diagnosed with acute lymphoblastic leukemia. Her insurer denied coverage for this and other bills, labeling the cancer a preexisting condition and offering no other recourse after rejecting her appeal, she said.

Those bills landed in collections, and her credit score nose-dived. Ramsey said she once visited the ER with chest pain she attributed to the stress of the six-figure debt. She eventually qualified for Medicaid, and her credit score has since recovered even though she never paid off the debt. She said collection agencies still call, but she ignores them.

Southern Guaranty Insurance Company did not respond to requests for comment.

Proponents of alternative insurance argue that stifling these more affordable options will just increase the ranks of those without any coverage.

“People should be able to spend their own money financing healthcare the way that works best for them,” said Brian Blase, president of Paragon Health Institute, an influential conservative think tank. Paragon pushed for ending the enhanced marketplace tax credits, arguing they fueled improper enrollment by heightening incentives for unscrupulous brokers to sign people up without their knowledge.

Robert Godfrey of Clearwater, Florida, appreciates having choices. When Godfrey’s monthly premium payment was slated to jump from $879 to around $1,250 this year, the 64-year-old hair salon owner switched to a $320-a-month membership with Zion HealthShare. Rarely needing medical care, Godfrey viewed the shift to a cheaper plan as a pragmatic choice. “Thank God I’m healthy,” he said.

Healthy and Outraged by Rising Premiums, He’s Betting on Alternative Insurance

Robert Godfrey, 64
Clearwater, Florida

Robert Godfrey, a hair salon owner, says he doesn’t need healthcare beyond preventive services and has never hit his deductible. So last year, when the expiration of enhanced federal subsidies was going to push his marketplace premium payment up 40% — to around $1,250 a month — he walked away. He called it an “outrageous increase.” Just months away from becoming eligible for Medicare, Godfrey opted for a cheaper alternative: a $320-a-month healthcare sharing plan. These arrangements, in which members pool their funds to cover one another’s medical costs, aren’t legally obligated to pay for expenses.

The Trump administration has relaxed regulations on some alternative plans. Last year, federal agencies Biden-era rules on how long short-term plans could last and how they could be marketed, then a marginal advantage in the competition for a share of $50 billion in federal rural health funding if they followed suit.

In a statement, CMS spokesperson Christopher Krepich said the administration is focused on ensuring “access to affordable coverage options, strengthening competition, and reducing unnecessary regulatory burdens, while maintaining appropriate consumer protections.”

State oversight of alternative insurance is a patchwork. In much of the nation, these plans face few restrictions. Many states, including , , and , have eased limits on short-term plans in the wake of the Trump administration’s moves, allowing them to be renewed for up to three years in total.

In Kansas, lawmakers overrode the governor’s veto to in March providing a tax break for people who enroll in healthcare sharing ministries. In her veto, Democratic Gov. Laura Kelly warned that these ministries are unregulated, “which opens the door to all sorts of fraud and abuse.” Kansas House Speaker Daniel Hawkins countered in a news release that “House Republicans believe families should have more flexibility and more control over their healthcare decisions, not fewer options and higher costs.”

Oklahoma weighed a earlier this year, though it did not pass.

Not all states are friendly toward alternative plans. ban short-term policies or have rules restrictive enough to deter insurers from selling them. California and Massachusetts are among the states with the most stringent rules, banning short-term plans and requiring clear warnings to people considering a healthcare sharing ministry in certain circumstances. Both also tax adults who forgo comprehensive coverage, while subsidizing marketplace premiums to encourage enrollment.

Still, the higher premiums will test these guardrails, said Héctor Hernández-Delgado, a director at the National Health Law Program, which advocates for quality healthcare for low-income people. He worries that consumers lured by the plans’ low prices could “be worse off down the road,” saddled with burdensome medical debt.

Now in remission, Ramsey urges those considering cheaper insurance to do careful research. “Make sure it’s covering what you need to be covered,” she said. “It could be too good to be true.”

Are you struggling to afford your health insurance? Have you decided to forgo coverage? Click here to contact �鶹Ů�� Health News and share your story.

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Watch: The Tug-of-War Over Taxpayer Dollars

Wed, 20 May 2026 09:00:00 +0000

Julie Rovner, �鶹Ů�� Health News’ chief Washington correspondent and host of the What the Health? podcast, recently spoke with Sen. Tammy Baldwin (D-Wis.) about the ongoing fight between President Donald Trump and Congress over control of federal spending.

Baldwin, who is a member of the Senate Appropriations Committee and the Senate Health, Education, Labor and Pensions Committee, said lawmakers have been forced to take unprecedented action to ensure the Trump administration properly spends taxpayer dollars.

“In this most recently passed bill that Donald Trump signed into law, we had to put guardrails that we’ve never had to put into our appropriations laws before to enforce our spending bills,” Baldwin said. “And those laws have made it clear that we expect that they must spend what we have appropriated, and not just all of it at the end of the fiscal year, but in a timely manner throughout the year.”

The conversation also addressed the success — and Trump-imposed limitations — of the 988 Suicide & Crisis Lifeline. The resource, which was created through a bipartisan effort, has led to a notable reduction in youth suicide, according to in the Journal of the American Medical Association.

“It’s heartwarming to know that this work matters,” Baldwin said.

This interview aired May 14 on Episode No. 446 of What the Health? From �鶹Ů�� Health News: “In Search of a New FDA Commissioner.”

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Big Companies Position Themselves for Payday From $50B Federal Rural Health Fund

Sarah Jane Tribble — Tue, 28 Apr 2026 09:00:00 +0000

Tory Starr is worried about the people who get medical care at Open Door Community Health Centers along California’s North Coast.

“They’re the folks that work at restaurants. They’re the teacher’s aides,” said Starr, a registered nurse who became Open Door’s chief executive more than six years ago. Those patients, he said, are “really the heart and soul of rural America.”

He said if his remote health centers don’t get a share of the billions of dollars Congress earmarked to transform health care in rural America, patients may soon lose services. About 50% of Open Door’s 60,000 patients are on Medicaid, the joint state and federal insurance program that, together with the related Children’s Health Insurance Program, covers with low incomes or disabilities.

When Congress approved the One Big Beautiful Bill Act last summer, it cut nearly $1 trillion from Medicaid over the next decade. Now, Starr hopes the $50 billion Rural Health Transformation Program, which was part of the same bill, will help keep his patients covered.

Yet, small community health care providers, such as Open Door, may find they are sharing the billions with an army of corporate giants before it reaches their patients.

Months after federal leaders announced that all 50 states won first-year awards, ranging from $147 million for New Jersey to $281 million for Texas, state plans reveal that a heavy dose of prescribed spending will go to companies that can increase the use of electronic health records, strengthen cybersecurity, and improve state and health system technology platforms.

And at least four large-scale coalitions of companies are now pitching multipronged services to the states. Many of the companies already work with regional health systems and states through Medicaid contracting or mobile and telehealth operations.

How those services will help improve the health care of rural Americans at places such as Open Door remains an open question.

States Stare Down Reporting Deadlines

Federal regulators were “really interested in seeing digital health investments” when they crafted the five-year rural health program rules last year, said Maya Sandalow, an associate director at the Bipartisan Policy Center, a think tank based in Washington, D.C. She co-authored a recent report on how the 50 states plan to invest in technology, including modernizing health care infrastructure and expanding virtual care options such as telehealth and remote patient monitoring.

“The rural health fund isn’t really designed to directly replace or offset the lost Medicaid funding,” Sandalow said, noting that the federal staffers in charge of the program — money that could help rural hospitals and clinics pay for patient care — at 15% of the total funding awarded to a state.

Federal regulators also established tight reporting deadlines, forcing states to move quickly.

States must file progress reports and obligate all first-year funding , according to the Centers for Medicare & Medicaid Services, the federal agency overseeing the program. States could see their awards decreased or terminated at any time if they fail to follow federal requirements, according to the .

As of early April, CMS had not approved or had only partially approved some state budgets, including those of Wyoming, Colorado, and Vermont, according to state officials. CMS spokesperson Catherine Howden, who declined to say which states still needed revised budgets approved, said the agency does not provide “state-by-state updates.”

In Alaska, the budget is approved but the state has not announced when it will release full grant proposals and awards, said Tricia Franklin, program coordinator for Alaska’s rural health transformation.

“Early summer was the target,” Franklin said. But the response from vendors and applicants has been “much greater than expected, so it may take us a little longer.”

Working with consulting companies is an established way for states to “quickly and effectively” meet federal deadlines and roll out grant money, said , national director for population health at the Milbank Memorial Fund, a nonprofit focused on state health policy work.

Upgrading Technology, Modernizing Rural Health

Science Applications International Corp., a Fortune 500 government contractor, pulled together the . SAIC does a variety of technology work such as cybersecurity and engineering support. The alliance also includes Walgreens and Mission Mobile Medical, which turns RVs into primary care clinics. A data analytics company, a telemedicine and software company, and a company that helps place medical graduates in health systems are also part of the coalition.

The SAIC alliance offers “an ecosystem” of companies that can coordinate the work states have promised, said , SAIC’s Rural Health Transformation Program lead and a former chief information officer for the Virginia Department of Health. Each of the companies has representatives focused on the rural program, he said.

A lack of digital infrastructure — such as electronic health records at different clinics and hospitals that can talk to one another — has been a consistent barrier for rural medical care teams, said the Bipartisan Policy Center’s Sandalow.

“The funding hasn’t always been there in order for rural areas to create the infrastructure that’s needed to fully adopt remote patient monitoring, telehealth, artificial intelligence in ways that will really be supportive,” Sandalow said. “It takes things like updating infrastructure, changing workflows.”

Sandalow’s found that Maine and Utah are investing in cybersecurity; Indiana, Missouri, and New Mexico plan to modernize their electronic health records; Oklahoma plans to buy hardware and software, subsidize subscriptions, and give technical support to rural providers; and states such as Arizona and South Carolina will use funds to create telehealth hubs or buy remote patient monitoring equipment.

Federal regulators, when creating the rural program’s spending rules, also said no more than 5% of a state’s total funding awarded could be used to replace electronic medical records systems that already meet federal standards. Sandalow said that means states will focus on enhancements and upgrades to their current systems.

Gainwell Technologies, which operates the systems for dozens of state Medicaid programs, is spearheading . Rushil Desai, a Gainwell senior vice president, said states’ detailed spending plans are “changing in real time.”

Maine’s Medicaid plan contracts with Gainwell, and the state’s initial application listed four contracts worth more than $16 million over five years for the company. The state confirmed it has received federal approval for only its first year of spending, which includes a to implement changes to the state’s Medicaid claims system.

James Lomastro, a senior-care advocate in rural Massachusetts with the nonprofit , said he worries that large vendors and health systems will get the state’s transformation dollars.

Clinics, home care agencies, and nursing homes that “actually provide day-to-day support in the community are mostly on the margins” of state discussions about how to spend the money, he said. A spokesperson for Massachusetts’ Executive Office of Health and Human Services, Olivia James, said state officials would “ensure that everyone has a seat at the table” with training, financial incentives, and direct investments.

Arizona’s rural fund budget, which is $167 million for the first year, allocates for medical diagnostic equipment and technology upgrades, including to electronic health records, specifically for rural health care facilities.

But it also for county public health departments, said Pima County Public Health Director Theresa Cullen. The approved budget includes up to $4 million for grants to support community health workers.

Tory Starr is a registered nurse and the chief executive officer of Open Door Community Health Centers. (Open Door Community Health Centers)

“In these rural communities, you need to be present,” Cullen said.

Alina Czekai, director of the CMS rural health transformation office, said her team plans to visit all 50 states. She spoke at the National Rural Health Association’s policy conference in Washington, D.C., in February and told the audience that her team wants “the money to go to rural communities, rural providers, rural patients.” The association’s members include rural hospitals and clinics, which are expected to suffer big losses under the Medicaid cuts.

In California, Open Door’s Starr said he provided input on his state’s initial application, which won $234 million in first-year funding, but he is not clear on what the next steps will be for getting money from the program.

For his patients, Starr said, money is needed for technology upgrades. After all, he said, updated electronic health systems could operate seamlessly and store the documentation needed to keep a patient enrolled in Medicaid.

Updated technology could be exactly what Open Door and other area clinics need to “help keep people covered,” Starr said.

�鶹Ů�� Health News senior correspondent Phil Galewitz and rural health care correspondent Arielle Zionts contributed to this report.

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Democrats Demand Trump Administration Halt Plan To Collect Federal Workers’ Health Data

Amanda Seitz — Tue, 21 Apr 2026 09:00:00 +0000

Democratic lawmakers are demanding that the Trump administration halt plans to collect sensitive medical records for millions of federal workers and retirees, as well as their family members.

The Office of Personnel Management 65 insurance companies to provide monthly reports with detailed medical and pharmaceutical claims data of more than 8 million people enrolled in federal health plans, �鶹Ů�� Health News reported earlier this month. The request, which could dramatically expand the personally identifiable medical information OPM can access, alarmed health ethicists, insurance company executives, and privacy advocates.

Now, OPM Director Scott Kupor has two letters on his desk — one from 16 U.S. senators and another led by Rep. Robert Garcia, the top Democrat on the House Oversight Committee — asking him to drop the agency’s proposal.

“The collection of broad, personally identifiable data regarding medical care and treatment raises concerns that OPM could target certain federal employees seeking vital health care services that the Administration disagrees with on political grounds,” the Democratic House members , citing �鶹Ů�� Health News.

The letters from congressional Democrats alone are unlikely to reverse OPM’s plans. Republicans — who control Congress and, ultimately, any oversight activities — have not weighed in on OPM’s notice.

OPM did not immediately respond to a request for comment on the letters. The agency, which said in its notice that it will use the data for oversight and to manage the federal health plans, has not publicly addressed written concerns about its proposal.

The notice, posted and sent to insurers in December, states that insurers are legally permitted to disclose “protected health information” to OPM and does not provide instructions to redact identifying information, such as names or diagnoses, from the claims.

That data could be used to implement cost-saving measures, health policy experts told �鶹Ů�� Health News earlier this month. But it would also give the Trump administration — which has laid off or fired tens of thousands of federal workers — access to a vast trove of personal information.

In the letters, Democratic lawmakers lay out a number of concerns about potential consequences of OPM’s obtaining detailed medical claims for millions of federal workers.

The — led by Adam Schiff of California and Mark Warner of Virginia — argues that OPM is not equipped to safeguard such sensitive data and that the administration could share the records across government agencies, as it has done with personal information on millions of Medicaid enrollees.

They also assert that the agency does not have a legal right to the data and that insurers’ sharing the information with OPM would “violate the core principles of the Health Insurance Portability and Accountability Act.” HIPAA requires certain organizations that maintain identifiable health information — such as hospitals and insurers — to protect it from being disclosed without patient consent. The proposal, the senators warn, threatens patients’ relationships with their clinicians, especially “sensitive disclosures regarding mental health, chronic illness, or other deeply personal conditions.”

“For these reasons, we strongly urge you to cease any further consideration of this proposal,” states the letter, which was sent to Kupor on April 19.

The American Federation of Government Employees, the largest union for federal employees, to �鶹Ů�� Health News’ reporting. The union noted in a statement from its national president, Everett Kelley, that OPM’s proposal “comes in the context of coordinated attacks on federal employees and repeated stretching of the legal boundaries for sharing sensitive personal data across government agencies.

“The question of what this administration intends to do with eight million Americans’ most private health information is not academic,” the AFGE statement read. “It is urgent.”

In an emailed statement, Kelley applauded the congressional letters.

“We are pleased that Democratic lawmakers on the Hill are just as outraged as we are over this administration’s blatant attempt to breach the privacy of millions of Americans across the country,” Kelley wrote. “We share their concerns regarding potential misuse of the information to continue illegally targeting workers and their demand for OPM to withdraw this proposal.”

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A New CDC Nominee, Again

Fri, 17 Apr 2026 18:35:00 +0000

The Host

Mary Agnes Carey �鶹Ů�� Health News Mary Agnes Carey is managing editor of �鶹Ů�� Health News. She previously served as the director of news partnerships, overseeing placement of �鶹Ů�� Health News content in publications nationwide. As a senior correspondent, Mary Agnes covered health reform and federal health policy.

President Donald Trump this week nominated a former deputy surgeon general who has expressed support for vaccines to lead the Centers for Disease Control and Prevention. Considered a more traditional fit for the job, Erica Schwartz would be the agency’s fourth leader in roughly a year, should she be confirmed by the Senate.

And Health and Human Services Secretary Robert F. Kennedy Jr. appeared on Capitol Hill this week in the first of several hearings discussing Trump’s budget request for the department. But the topics up for discussion deviated quite a bit from the subject of federal funding, with lawmakers raising issues of Medicaid fraud, measles outbreaks, the hepatitis B vaccine, peptides, unaccompanied minors, and much, much more.

This week’s panelists are Mary Agnes Carey of �鶹Ů�� Health News, Anna Edney of Bloomberg News, Emmarie Huetteman of �鶹Ů�� Health News, and Joanne Kenen of the Johns Hopkins University Bloomberg School of Public Health and Politico Magazine.

Panelists

Anna Edney Bloomberg News

Emmarie Huetteman �鶹Ů�� Health News

Joanne Kenen Johns Hopkins University and Politico

Among the takeaways from this week’s episode:

Trump on Thursday named four officials to the CDC’s leadership team. Schwartz, whom he picked as director, is a physician and Navy officer who served as a deputy surgeon general during Trump’s first term. She has voiced support for vaccines and played a key role in the covid-19 pandemic response.
RFK Jr. testified before three committees of the House of Representatives this week on the president’s budget request for HHS. While the hearings touched on a wide variety of topics, notable moments included a slight softening of Kennedy’s stance on the measles vaccine, including the acknowledgment that being immunized is safer than having measles — although he also stood by the decision to remove the recommendation for the newborn dose of the hepatitis B vaccine.
New studies on the use of acetaminophen during pregnancy and the effects of water fluoridation on cognitive function refute Trump administration claims. And a White House meeting that brought together Trump, Kennedy, and other leaders of the Make America Healthy Again movement aimed to soothe concerns among supporters — yet there’s reason to believe the overture won’t completely mend fences between the Trump administration and the MAHA constituency ahead of the midterm elections.

Also this week, �鶹Ů�� Health News’ Julie Rovner interviews Michelle Canero, an immigration attorney, about how the Trump administration’s policies affect the medical workforce.

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

 Mary Agnes Carey: Politico’s “,” by Alice Miranda Ollstein.

Joanne Kenen: The New York Times’ “,” by Teddy Rosenbluth.

Anna Edney: Bloomberg’s “,” by Anna Edney.

Emmarie Huetteman: �鶹Ů�� Health News’ “Your New Therapist: Chatty, Leaky, and Hardly Human,” by Darius Tahir.

Also mentioned in this week’s podcast:

JAMA Pediatrics’ “,” by Kira Philipsen Prahm, Pingnan Chen, Line Rode, et al.
Proceedings of the National Academy of Sciences’ “,” by John Robert Warren, Gina Rumore, Kamil Sicinski, and Michal Engelman.
�鶹Ů�� Health News’ “Pennsylvania Town Faces Fallout From Trump’s Environmental Rule Rollback,” by Stephanie Armour and Maia Rosenfeld.
The New York Times’ “,” by Sheryl Gay Stolberg.
Wakely Consulting Group’s “,” by Michelle Anderson, Chia Yi Chin, and Michael Cohen.

Click to open the transcript Transcript: A New CDC Nominee, Again

Trump’s Personnel Agency Is Asking for Federal Workers’ Medical Records

Amanda Seitz — Wed, 08 Apr 2026 09:00:00 +0000

The Trump administration is quietly seeking unprecedented access to medical records for millions of federal workers and retirees, and their families.

A from the Office of Personnel Management could dramatically change which personally identifiable medical information the agency obtains, giving it the power to see prescriptions employees had filled or what treatment they sought from doctors. The regulation would require 65 insurance companies that cover more than 8 million Americans — including federal workers, retired members of Congress, mail carriers, and their immediate family members — to provide monthly reports to OPM with identifiable health data on their members.

The proposal is prompting unease from insurers as well as health policy and legal experts, who are concerned about the legality of OPM acquiring such a sweeping database of sensitive health information, and the agency’s ability to safeguard it.

OPM could use the data to analyze costs and improve the system, said Sharona Hoffman, a health law ethicist at Case Western Reserve University in Ohio.

“But,” she said, “they are going to get very, very detailed and granular data about everything that happens. The concern here is the more information they have, they could use it to discipline or target people who are not cooperating politically.”

OPM spokespeople did not respond to repeated requests for comment. The agency’s notice asks insurers that offer Federal Employees Health Benefits or Postal Service Health Benefits plans to furnish “service use and cost data,” including “medical claims, pharmacy claims, encounter data, and provider data.” It says the data will “ensure they provide competitive, quality, and affordable plans.”

The notice, posted and sent to insurers in December, does not instruct them to redact identifying information — a burdensome process that they would need federal guidance to complete.

Instead, it states that insurers are legally permitted to disclose “protected health information” to OPM. Several experts in health policy and law consulted by �鶹Ů�� Health News said they interpreted the request to mean the Trump administration was seeking identifiable data.

The ask comes a year into a Republican administration that has been defined by haphazard mass layoffs and firings of thousands of federal workers, who say they were in acts of or for the . Under President Donald Trump, the government has also routinely tested the legal bounds of sharing sensitive and personally identifiable tax or health information across government agencies in its efforts to carry out mass immigration arrests or pursue identify fraud.

“You can anticipate a scenario where this information on 8 million Americans is now in the hands of OPM and there’s a real concern of how they use it,” said Michael Martinez, senior counsel at Democracy Forward, an advocacy organization that filed a public comment opposing OPM’s proposal in February. Martinez previously worked at OPM.

“They’ve given no information about how they would treat that information once they have it,” he said.

Among Martinez’s concerns is how the administration might use information about employees who have sought abortions — 41 states have some type of abortion ban — or transgender treatment, medical care that the Trump administration has tried to curb.

The American Federation of Government Employees, the largest union representing federal workers, did not respond to requests for comment.

Martinez and others who reviewed the notice for �鶹Ů�� Health News said the proposal was so vague that they were uncertain, exactly, what medical records OPM wants to access.

At the very least, they said, the proposal would allow the agency to access the medical and pharmaceutical claims of patients with their identifying information, such as names and birth dates. Claims data also includes diagnoses, treatments, visit length, and provider information.

OPM’s request to view “encounter data” could allow the agency to look at “anything and everything,” Hoffman noted.

That could include detailed medical records, such as a doctor’s notes or after-visit summaries.

Jonathan Foley, who worked at OPM advising on the Federal Employees Health Benefits program during the Obama and Biden administrations, said he doubts the agency has the capability to ingest such minutiae.

The agency, however, could easily begin collection of personally identifiable medical and pharmaceutical claims information from insurers, he said.

Foley said he sees a benefit to OPM having broader access to de-identified claims data. In recent years, OPM has ramped up its analysis of claims data, which has allowed it to examine prescription drug costs and encourage plans to offer federal workers cheaper alternatives. He’s worried, though, that the Trump administration’s proposal goes too far, because it appears to seek identifiable data.

“It’s kind of shocking to think of them having protected health information without having strict guardrails,” he said.

The Health Insurance Portability and Accountability Act of 1996, or HIPAA, requires certain organizations that maintain identifiable health information — such as hospitals and insurers — to protect it from being disclosed without patient consent.

Those entities can disclose such information without consent only in specific scenarios, with a justification that it is deemed “reasonable” or “necessary.” Even then, HIPAA mandates that they provide only the minimum amount of information required.

OPM argues in its notice that it is entitled to the information from insurers “for oversight activities.”

But several people who reviewed the notice questioned whether OPM’s explanation for requesting the information is sufficient.

“The language in it seems quite broad and encompasses potentially a lot of information and data and is sort of light on justification,” said Jodi Daniel, a digital health strategist who helped develop the legal framework for HIPAA privacy rules over two decades ago.

Several major insurers that offer federal employee health plans — including the Blue Cross Blue Shield Association, Kaiser Permanente, and UnitedHealthcare — declined to comment on their plans to comply with the notice or offer insight on where plans to implement the data sharing stood.

Only one insurer individually weighed in with a public comment on OPM’s plan. In March, CVS Health executive Melissa Schulman urged the federal agency to reconsider its proposal.

“OPM’s request raises substantial HIPAA compliance issues,” Schulman wrote, arguing that federal law allows the agency to examine records but not to collect data. Insurers would be breaking the law by providing personal health information for OPM’s “vague and broad general purposes,” she added.

Schulman, who did not respond to additional questions from �鶹Ů�� Health News, also raised concerns about a lack of data privacy protections. She noted that insurers could be liable for security breaches or other situations “where consumer health information is inappropriately shared and outside of our control.”

In 2015, OPM announced the personal records of roughly 22 million Americans had been in a data breach that has been blamed on the Chinese government.

The Association of Federal Health Organizations, which represents CVS Health and dozens of other federal health plan carriers, also weighed in with a 122-page comment opposing the notice. In it, AFHO Chair Kari Parsons emphasized that insurance carriers are bound by HIPAA to safeguard personal health information.

Federal law requires carriers “to furnish ‘reasonable reports’ OPM determines to be necessary,” Parsons wrote, “not to furnish the individual claims data of every individual.”

This isn’t the first time OPM has requested detailed data from insurers. In the AFHO comment, Parsons noted OPM had made a similar proposal in 2010, prompting HIPAA concerns. She described how, after several years of negotiations with AFHO, they discussed — but OPM never finalized — an agreement in 2019 for carriers to share de-identified data with OPM.

But since then, Parsons wrote, OPM has collected such detailed information on enrollees and their families that, with OPM’s new request, the agency may be able to trace even de-identified records to individuals.

OPM has not provided any update since closing comments in March. The agency would need to publish a final decision before anything officially changes.

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Many ACA Customers Are Paying Higher Premiums. Most Blame Trump and Republicans, Poll Finds.

Julie Appleby — Thu, 19 Mar 2026 09:01:00 +0000

Most people who get their health coverage through the Affordable Care Act say they face sharply higher costs, with many worried they will have to pare back other expenses to cover them, according to a . Some are uncertain whether they will be able to continue paying their premiums all year.

Still, 69% of those enrolled last year signed up again this year, often for less generous coverage. About 9% said they had to forgo insurance, according to the survey by �鶹Ů��, a health information nonprofit that includes �鶹Ů�� Health News.

The �鶹Ů�� poll revisited the people who responded to of Affordable Care Act enrollees during open enrollment for ACA plans.

Steve Davis, a 64-year-old retired car salesman in Rogersville, Tennessee, who participated in both polls, said he was looking at an annual premium of about $14,000 to renew his ACA coverage this year. He didn’t qualify for enough of a tax credit to defray the cost, he said, after Congress gridlocked on an extension of more-generous subsidies put in place under President Joe Biden.

But things worked out for Davis. He landed a job at a convenience store that came with insurance, with his share costing about $100 more a month than the $300 he paid for an ACA plan last year, before the enhanced tax credits expired.

“As it happened, the Lord provided and my insurance kicked in through my employer,” he told �鶹Ů�� Health News.

In the November survey, many respondents were not sure what they would do for their health insurance in the coming year.

Some were waiting to see whether Congress would extend the enhanced premium subsidies, which had helped many people get lower-cost — or even zero-cost — health premiums.

Congress’ inaction left some consumers in a bind.

Now, the new poll found, affordability issues are hitting home as the midterm election approaches. And that might play a role in competitive districts, creating headwinds for Republicans.

Midterm Signals

Across all respondents who were registered to vote, the poll found more than half place “a lot” of blame for rising costs on Republicans in Congress (54%), with a similar share putting the same level of blame on President Donald Trump (53%). A smaller group placed a lot of the blame on congressional Democrats (34%). Among independents, a group expected to be a key factor in many districts, the percentages putting a lot of the blame on the GOP (56%) and Trump (58%) were higher.

Among Republicans, 60% placed a lot of the blame on Democrats in Congress.

“Those who have marketplace coverage, who remained on it, they’re really struggling with health care costs,” said Lunna Lopes, senior survey manager for �鶹Ů��.

While more than half (55%) of returning ACA enrollees said they will have to pare back on other household expenses to cover health care costs, about 17% said they might not be able to continue paying insurance premiums throughout the year.

Overall, 80% of those who reenrolled for 2026 said their premiums, deductibles, or other costs are higher this year than last, with 51% saying they are “a lot higher.”

About three-quarters of ACA enrollees in the survey who were registered voters said the cost of health care will have an impact on their decision to vote — and on which party’s candidate they support.

Democrats were more than twice as likely as Republicans to say those costs will have a major impact on their decision.

“Democrats seem particularly more energized by health care costs than their Republican counterparts,” Lopes said.

Enrollment Tally Down

Data released Jan. 28 by federal officials showed that about 23 million people enrolled in Obamacare plans across the federal healthcare.gov marketplace and those run by states, about 1.2 million fewer than in 2025.

But it isn’t yet known how many are paying their monthly premiums on time, and many analysts expect overall enrollment numbers to fall as that data becomes available in the coming months.

For most people, having to pay more for premiums this year was mainly due to the expiration of the enhanced tax cuts, pollsters noted. Because the subsidies that remain are less generous, households have to pay more of their income toward coverage. Congressional inaction also meant the restoration of an income cap for subsidies at four times the poverty level, or $62,600 for an individual, sticking people like Davis with higher bills.

Not everyone saw increases.

Matthew Rutledge, a 32-year-old substitute teacher in Apple Valley, California, who participated in both �鶹Ů�� polls, said he qualified as low-income and his subsidies fully offset his monthly premium payment, just as they did last year. He does have copayments when he sees a doctor or accesses other medical care, but he told �鶹Ů�� Health News that “as long as the premium doesn’t go up, I’m fine with it.”

Rising premiums are fueled by a variety of factors, including hospital costs, doctors’ services, and the prices of drugs.

To lower premiums, insurers offer plans with higher deductibles or copayments. In the ACA, plans with lower premiums but higher deductibles are called “catastrophic” or “bronze” plans. “Silver” plans generally balance premiums and out-of-pocket spending, while the highest-premium plans with lower deductibles are “gold” or “platinum.”

About 28% of those who stayed in the ACA marketplaces switched plans, the pollsters noted.

One 56-year-old Texas man told pollsters that his family’s income exceeded the cap for subsidies, so they switched down from a gold plan to a bronze. “Even doing that, our premiums are three times what they were in 2025, with lower plan features and a higher deductible,” he said, according to a �鶹Ů�� poll news release.

For some, reenrolling was not a viable option.

In addition to the 9% who said they are now uninsured, about 5% said they switched to some type of non-ACA coverage.

Some people, like Davis, landed job-based coverage, while others found they qualified for Medicaid, the joint state-federal program for low-income residents.

Such churn in and out of ACA coverage is not unusual, Lopes noted. “People get a job. They get married. They age into Medicare,” the program for older or disabled people, she said.

The poll highlighted that many people dropping coverage were younger, between 18 and 29. About 14% of people in that range now say they are uninsured.

That’s not surprising, given that younger people tend to use health coverage less. ACA insurers said one reason they raised premiums this year was because they expected more young or healthy people to drop out, leaving them with a higher share of older, more costly enrollees. Among those 50 or older, the poll found that only 7% are now uninsured.

GOP critics of the now-expired enhanced subsidies say they were always meant to be temporary. Extending them would have cost about $350 billion from 2026 to 2035, .

But not extending them means more people will become uninsured. The CBO said the extension would have meant 3.8 million more people having insurance coverage in 2035.

�鶹Ů�� pollsters, in February and early March, surveyed 1,117 U.S. adults, more than 80% of the ACA enrollees originally polled in November, online and by telephone. The margin of error is plus or minus four percentage points for the full sample.

Are you struggling to afford your health insurance? Have you decided to forgo coverage? to contact �鶹Ů�� Health News and share your story.

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Lost in Transmission: Changes in Organ Donor Status Can Fall Through Cracks in the System

Céline Gounder — Tue, 17 Mar 2026 09:00:00 +0000

When Raven Kinser walked into a Virginia Department of Motor Vehicles office two summers ago, she completed a driver’s license application that included the option to register as an organ donor. The form provides a checkbox to opt in, but not one to opt out. Kinser left the donor registration box unchecked, reflecting her decision to reverse an earlier donor registration. Six months later, after she was declared dead at Riverside Regional Medical Center in Newport News, Virginia, her parents say, they learned that her decision did not prevent organ procurement.

Raven’s case reveals a little-known gap in the U.S. donation system: There is no clear, nationally binding way to opt out — or to ensure a later “no” overrides an earlier “yes” in a different state.

This gap, along with a range of other issues related to the organ procurement system, has become a point of bipartisan congressional concern. Late last year, the House Ways and Means subcommittee on oversight examining what members described as shortcomings, including alleged consent failures.

The panel’s scrutiny of organ procurement organizations, or OPOs, and their consent practices is a first step toward a more meaningful accountability plan that could help maintain trust across the system, according to some committee staff members.

The trust in our organ procurement and transplant system “has been eroded,” said Rep. Terri Sewell of Alabama, the panel’s senior Democrat, calling for stronger transparency and oversight to rebuild public confidence.

“Respect for autonomy — our ability to make our own decisions (self-determination) — allows for both ‘yes’ and ‘no’ decisions and for changing one’s mind,” Margaret McLean, a bioethicist at Santa Clara University, said in an email.

“Medical decision-making is not well served in a context of ambiguity,” she said.

And if a donor revokes consent, she added, “revocation by that person should carry the same ethical and procedural weight as the initial authorization, perhaps more.”

Raven Kinser Changed Her Mind

Raven was 25 when she died. Her parents, Jeff and Jaime Kinser, were at home in Michigan when they received the phone call that shattered their world. They drove through the night to the Newport News hospital, where they learned Raven’s disposition had been referred to LifeNet Health, the region’s federally designated OPO. LifeNet a failing OPO by the Centers for Medicare & Medicaid Services, meaning it doesn’t meet the government’s standards for how well it finds donors and recovers usable organs for transplant compared with other organizations.

Under federal law, hospitals are required to refer deaths and imminent deaths to OPOs, which take responsibility for donation-related decisions and discussions.

OPOs occupy a hybrid position in the health care system, as private nonprofit entities that hold exclusive, federally authorized contracts to recover organs within defined regions. They are regulated by CMS and overseen by the Health Resources and Services Administration, but that oversight occurs primarily through certification standards, performance metrics, and periodic audits rather than routine public disclosure requirements. With donor registries largely managed at the state level and no unified federal reporting requirement for removals, comprehensive national data on revocations is elusive.

OPOs are meant to separate bedside care from organ procurement decisions — to help prevent conflicts of interest and preserve the trust that decisions about life-sustaining treatment are made solely in the dying patient’s interest. But the , leaving families unsure who is in control if and when conflicts arise.

The Kinsers, for instance, felt their daughter would not have wanted to go through the donation process, but, at the time, had no evidence. Jaime remembers telling her husband that Raven would have been mad at them for letting it happen. In an effort to stop it, Jaime inquired about whether she would be asked to sign a consent form. But a LifeNet staff member told her that wasn’t an option because donation was Raven’s “living will,” Jaime said. Meanwhile, Raven’s parents said, her personal effects, including her Virginia driver’s license, which bore no donor designation, had not yet been turned over to the family, leaving them no meaningful way to challenge LifeNet’s determination in real time.

Jaime struggled with this outcome, even mentioning in Raven’s obituary that she was an organ donor. “How would you try to make peace with something that you felt was so wrong but had no proof?” Jaime said.

Two months passed before the Kinsers gained possession of the license, which, as they had expected, showed that Raven had not opted to be an organ donor.

According to the Kinsers, LifeNet staff told them that Raven’s status as a registered donor was established by her designation on her older Michigan license.

An emailed statement attributed to Douglas Wilson, LifeNet executive vice president, said the OPO follows federal law on organ donation, the , and queries applicable state donor registries, relying on time stamps and governing law to determine the , legally valid expression of intent. Under that framework, a prior donor authorization remains enforceable unless a valid revocation is recorded in the regional OPO’s donor registry.

Because of privacy laws, Wilson said, LifeNet could not comment on the specifics of any individual case.

Raven Kinser’s choice not to be a donor when she applied for a Virginia license in July 2024 was not reflected in the registry LifeNet consulted, according to her parents, who said that is what the organization told them. According to Lara Malbon, executive director of Donate Life Virginia, which manages the state’s organ donor registry, if someone changes their donor status while completing a Virginia driver’s license or ID transaction, “that information is sent to our registry, and the registry is updated daily to reflect those changes.” Malbon also said Virginia’s registry includes only people who have “affirmatively said ‘yes’ to becoming an organ, eye, and tissue donor, and it retains records solely for those who have made that decision.”

The Kinsers said they were never told why Raven’s Virginia DMV record was insufficient, or how an older yes from Michigan could outweigh a newer no in Virginia.

In December, the Kinsers filed a complaint with the Health Resources and Services Administration, urging federal regulators to investigate LifeNet’s actions and require OPOs to provide families with documented proof of the donor’s current status at the time of referral. They also called for OPOs, which operate as federally designated regional monopolies but are structured as private nonprofits, to be made subject to public records laws.

When Opting Out Doesn’t Stick

Such confusion is not unique to the Kinser family. It is a consequence of the organ donation consent process in the United States.

“I have also wondered that: why there’s not just one” registry for organ donation, Jaime said. If you go to get a firearm, you have one federal registry, she said.

Here’s how the system works: Americans typically register their organ donation intentions when they apply for driver’s licenses through state DMVs, and that decision remains governed largely by state law. That has led to 50 different sets of rules and very little federal regulation of what has become an in the U.S.

In some states, a donor checkbox is a binding legal document. In other states, the same choice may have different rules about when it takes effect, what it covers, and how it can be revoked.

Those differences can be big. State rules determine whether a person’s “gift” is limited to transplantation or also includes research and education. They determine whether the donation authorization includes tissue. And they can determine what counts as a valid revocation and when it is legally recognized.

Because of the system’s fragmentation, though, signals can cross when someone changes their mind, like Raven; it’s not always reflected from one state system to another.

Under state versions of the Uniform Anatomical Gift Act, a donor’s most recent legally valid expression of intent is meant to control.

“Personal autonomy is paramount to everything,” said Adam Schiavi, a neurointensivist who studies end-of-life decision-making. “If I say I want to be a donor, or if I say I don’t want to be a donor, that has to take precedence over everything else.”

But states differ in how revocation must be recorded and which registry is considered authoritative if someone has lived in more than one state. Those inconsistencies can create uncertainty when records conflict across jurisdictions.

“It has to be the most recent expression, not the most recent yes,” Schiavi said.

In Michigan, a change to someone’s donor status is reflected immediately in the secretary of state’s system, but only affirmative “yes” registrations appear in the registry. Removal information remains in internal motor vehicle records. In Virginia, the state registry includes only those who have affirmatively said “yes,” retaining records solely of donors, creating potential gaps if someone believes a DMV change alone is sufficient.

Elsewhere, processes and volumes differ sharply. New Mexico updates driver records in real time but does not transmit status changes to its donor registry. Instead, donor services receive restricted search access. The state logged nearly 15,000 removals in late 2021 and almost 30,000 in 2022. Florida, which maintains formal removal records through weekly DMV data files, reported 356,161 removals in 2020, more than 1.5 million in 2023, and over 1.2 million in 2025. Kentucky processed 847,371 donor registrations from 2020 to 2025, but only 16,043 icon removals, with registry withdrawal handled separately. In 2025, more than 570,000 Texans opted into the registry, while over 31,000 individuals requested removal.

According to a federal official who asked not to be identified for fear of professional repercussions, OPOs have been highly effective at lobbying states to broaden the definition of consent and authorization — shaping how those terms are applied, whether those statuses must be renewed, and how easy or difficult it is for someone to opt out.

In subsequent correspondence with federal officials, the Kinsers have urged reforms to prevent OPOs from relying on older registry entries when a more recent state DMV record exists, and they have called for criminal penalties in cases in which consent is knowingly misrepresented. Federal regulators have not indicated whether such proposals are under consideration.

Congress Takes a Closer Look

Ethicists have long cautioned that consent must be more than a checkbox and must remain grounded in respect for the donor-patient. In an October on organ transplantation, the American College of Physicians emphasized that clinicians’ primary duty is to the patient in their care, and that maintaining trust requires transparency and safeguards to prevent conflicts of interest from blurring that “bright line.”

Advocates say those steps leave unresolved the core problem raised by the Kinser family: the lack of a clear, legally binding way for people to say “no” and for that decision to follow them across state lines.

The said it “supports strengthening donor registries and enhancing registry interoperability to ensure that an individual’s documented donation decision is honored.” But OPOs have also argued that current policies protect donation as a legally enforceable gift and prevent families from overriding a loved one’s “yes” in the midst of grief. They argue that stronger, more durable consent helps reduce missed donations and saves lives.

Congress and federal regulators are considering changes to the nation’s organ donation system, including how consent is recorded and what should happen when a donor changes their mind.

Sen. Ron Wyden (D-Ore.) last year to create new federal standards for patient safety, transparency, and oversight of organ transplants, including a formal authorization for hospital or OPO staff to pause harvesting if there is any “clinical sign of life.”

HHS press secretary Emily Hilliard said the agency is “committed to holding organ procurement organizations accountable” and to “restoring integrity and transparency” to organ donation policy, calling reforms essential to informed consent and protecting donor rights. CMS issued related March 11, but it does not address the problems highlighted by the Kinsers’ case.

Critics of the organ transplant system say it is difficult for families to obtain documentation or independently verify how consent determinations were made in disputed cases.

HRSA has launched a sweeping modernization of the Organ Procurement and Transplantation Network, the national system that oversees organ allocation and transplant policy. Federal officials have described the overhaul as the most significant restructuring of the transplant system in decades, aimed at breaking up a long-standing contractor monopoly, strengthening patient safety oversight, and replacing aging technology infrastructure.

Central to that effort is modernizing the OPTN’s data systems: improving interoperability, audit trails, and transparency in how decisions are documented and reviewed. A more modern federal data architecture could make it easier to trace which registry was queried, what time stamp controlled, and how a consent determination was reached in disputed donations that span multiple states. But the modernization effort would not change the underlying state-by-state legal framework for donor authorization and what counts as a valid “no.”

Meanwhile, Donate Life America, a national nonprofit that supports state donor registries, also runs the , a central database that allows people to sign up as organ donors directly. Unlike many DMV systems, the national registry lets people log in at any time to view, update, or remove their registration and print proof of their decision. The group is also starting a project to let participating states send registrations directly into the national system, creating one place to track donor sign-ups and removals across state lines.

Each of the proposals comes with trade-offs, and both advocates and OPOs have raised concerns about how they would work in practice.

“Just doing a dump truck dump of information is not going to do much unless you really apply it through checking and auditing,” said Arthur Caplan, a professor of bioethics at New York University’s Grossman School of Medicine. “It could be like the IRS. They don’t have to audit everybody. Just do a spot audit once in a while.”

The Kinsers aren’t opposed to organ donation itself. They celebrated Raven’s donation in her obituary, and in their complaint to federal regulators, they wrote, “We are NOT anti-organ donation, and we will never take away the gift of life our oldest daughter gave to others. However, that was not LifeNet’s choice to make.”

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As Lung Disease Threatens Workers, Lawmakers Seek Protections for Countertop Manufacturers

Céline Gounder — Thu, 12 Mar 2026 09:00:00 +0000

César Manuel González, 37, used to work with stone that was engineered to endure: dense, polished slabs designed to outlast the kitchens in which they were installed.

Engineered quartz countertops have surged in popularity in the home renovation market, with industry analysts estimating the global engineered stone market at . It’s continuing to expand as quartz surfaces replace natural stone in kitchens in the United States and worldwide.

When González was working, the dust that rose from his saw didn’t look extraordinary. It settled on his clothes, in his hair, across the shop floor. In a small countertop fabrication shop, he cut marble and granite before shifting to engineered stone after the 2008-09 recession, when demand for cheaper quartz countertops surged.

But the crystalline silica released while the engineered stone was cut and polished also settled into his lungs, scarring them beyond repair. What began as breathlessness hardened into silicosis, an irreversible disease that stiffens the lungs until even ordinary movement becomes effort.

A lung transplant was his path forward. The procedure can extend survival, but it redraws the boundaries of a life: anti-rejection drugs every day, constant monitoring, vulnerability to infection, the knowledge that breathing depends on the fragile acceptance of another person’s donated organ.

González, who was diagnosed with silicosis in 2023, is not alone in dealing with a disease that once was associated with miners at the end of long careers. It’s now prevalent among the much younger, often Hispanic men who work in this industry, physicians and public health officials say.

In the United States, cases are appearing in countertop fabrication shops from California to Texas, Florida, and the Northeast. Because silicosis is not a nationally reportable disease and surveillance varies by state, no comprehensive national count exists. But clinicians who treat occupational lung disease say the number of workers — often men in their 30s and 40s — diagnosed after cutting engineered stone has risen sharply over the past decade.

As of , California had identified 519 confirmed cases of engineered-stone-associated silicosis and 29 deaths since 2019. The median age at diagnosis is 46; at death, 49.

Doctors don’t debate whether working with engineered stone can scar lungs.

Manufacturers argue, though, that proper ventilation, wet cutting, and respirators can make fabrication safe. Workers, physicians, and plaintiffs’ attorneys counter that a material composed almost entirely of crystalline silica may be impossible to handle safely at scale.

“This is comparable to the tobacco industry saying cigarettes are safe,” said epidemiologist David Michaels, an assistant labor secretary under President Barack Obama who led the Occupational Safety and Health Administration.

A computer-operated wet saw cuts though a quartz slab in 2019 at a shop in Tipton, Indiana. (Michael Conroy/AP)

More than 370 lawsuits have been filed by workers who say engineered stone manufacturers failed to warn employees about the risks or sold a product that cannot be fabricated safely. At the same time, members of Congress are that would largely shield manufacturers from liability in those cases, turning a workplace health crisis into a national debate over regulation, responsibility, and the limits of civil litigation.

Gustavo Reyes, 36, is part of that debate. Like González, he spent the early years of his career cutting marble and granite before shifting to engineered stone, a quartz-based material that can contain up to 95% silica and generates far more hazardous dust when cut.

In the shop, he said, cutting was done with water to control the dust. But finishing work — sanding and shaping — generated heavy dust. He said he wore disposable respirator masks or a reusable elastomeric respirator with filters. A door was kept open. Fans ran overhead.

When he was diagnosed in 2021, he did not know what silicosis meant. The doctor told him that there was no medication and that he had three to five years to live. He received a lung transplant in 2023.

Asked who he believes is responsible, Reyes answered: “The industries who created the artificial stone, the product.” Manufacturers dispute that characterization. Major companies say engineered stone can be fabricated safely when employers follow OSHA dust controls, including wet cutting, ventilation, and respirator use.

An Old Disease, Reengineered

Silicosis is not new. It was synonymous with mining disasters and sandblasting, most notoriously in the , when hundreds of workers drilling through silica-rich rock in West Virginia in the early 1930s developed acute silicosis after months of unprotected exposure to dust. In 1938, advised that the disease could be prevented if dust controls were conscientiously applied.

What is new is the industry in which it has resurfaced.

Engineered stone, often marketed as “quartz,” is typically composed of crushed quartz bound with resins and pigments. Unlike marble, which contains little crystalline silica, engineered slabs contain very high levels of the substance.

Cutting changes the material.

“When you grind it, when you cut it, you’re pulverizing it,” said Robert Blink, an occupational and environmental medicine specialist who treats patients with advanced silicosis in Chicago and is a member of the Western Occupational and Environmental Medical Association. “You’re weaponizing the silica.”

Power tools fracture the surface into respirable particles small enough to lodge deep in the lungs. Repeated exposure triggers inflammation and fibrosis. Once scarring begins, it doesn’t reverse.

What Happens When You Look for It

In California, physicians say the pattern emerged gradually.

Robert Harrison, an occupational medicine physician at the University of California-San Francisco, helped identify the of engineered stone silicosis cases in California in 2019 after several workers from the same countertop fabrication shop died or were diagnosed with the disease. He described the crisis as “the largest outbreak of silicosis in decades.” What initially appeared as isolated cases of unexplained lung scarring in young men resolved into a recognizable occupational epidemic once work histories were examined.

Jane Fazio, a pulmonologist at UCLA, recalls seeing advanced fibrosis in otherwise healthy workers. “They have families. They were working full-time,” she said. Some experienced respiratory failure within a few years.

When doctors compared work histories, the pattern became unmistakable: Many of the men had worked in small shops cutting and polishing engineered stone countertops.

Sheiphali Gandhi, an occupational and environmental pulmonologist at UCSF, warned that the true burden remains uncertain. “We’re missing cases,” she said. “There’s no national surveillance system for this.”

California designated silicosis a reportable disease . Since 2019, statewide surveillance has identified hundreds of cases linked to engineered stone. The numbers probably underestimate the toll, though makes the illness visible.

Outside California, there is no comparable tracking.

Early Warnings

California was not the first place this happened.

The earliest modern alarm came from Israel. Caesarstone, a company founded on a kibbutz in the late 1980s, helped popularize quartz countertops globally.

Israeli physicians began in young countertop workers as early as 1997.

“We had never seen this before,” said Mordechai Kramer, a retired pulmonologist who previously worked at Rabin Medical Center in Israel. “In classic silicosis, you expect long exposure, decades. Here, it was much shorter.”

Several patients required lung transplantation.

Despite the warning signs, the market continued to expand.

Australia confronted the same pattern in the late 2010s.

Rather than wait for sporadic diagnoses, Australian regulators launched systematic CT-based screening of artificial-stone workers. Disease prevalence was far higher than anticipated.

Ryan Hoy, a respiratory physician and occupational health researcher at Australia’s Monash University, described severe disease in workers with relatively short exposures.

Authorities examined whether wet cutting, ventilation, and respirators could reduce exposure sufficiently. They ultimately concluded that even with controls, fabrication of high-silica engineered stone posed unacceptable risk.

In 2024, Australia prohibited the manufacture, supply, and installation of engineered stone containing high levels of crystalline silica. Manufacturers pivoted toward lower- and zero-silica formulations.

In the United States: Who’s To Blame?

Fabrication in the U.S. continues under OSHA’s silica standard, which relies on exposure limits, wet cutting, ventilation, and respiratory protection. Manufacturers argue that compliance works and that the problem lies with shops that fail to follow the rules.

OSHA first adopted silica limits based on research from mining, quarrying, and foundry work. Although the agency updated the rule , it regulates crystalline silica broadly and does not distinguish between natural stone and high-silica engineered quartz.

The regulatory debate has now spilled into Congress. , introduced in September by Rep. Tom McClintock (R-Calif.), would largely shield manufacturers and distributors of engineered stone from civil lawsuits arising from the manufacture or sale of their products. McClintock’s office did not respond to a request for comment.

The bill was the subject of a January .

Supporters of the measure argue that manufacturers should not be held liable for injuries caused by employers who fail to follow OSHA standards. Opponents warn that removing litigation pressure would eliminate one of the few mechanisms capable of driving product reform if the material itself cannot be safely handled.

Michaels, the former OSHA official, sees the stakes as historical. “Litigation drives change,” he said, pointing to past battles over asbestos and tobacco.

Plaintiffs’ attorneys argue that compliance with the OSHA silica standard does not eliminate risk.

“It’s not a few bad actors,” said Raphael Metzger, a product liability attorney who has filed roughly 200 silicosis-related injury cases and a class action seeking medical monitoring. He said the issue is the product’s composition, not isolated regulatory noncompliance.

James Nevin, a tort attorney representing workers in silicosis cases, framed the congressional debate as a fight over accountability. “When it comes to causation, there’s no question,” he said, arguing that the wave of cases explains why manufacturers are now seeking what he calls “a manufacturer bailout.”

In mid-2025, Caesarstone US introduced its first products containing less than 1% silica. In response to questions, Irene Williams, a spokesperson for Caesarstone, said, “The company is not responding as these are matters of pending litigation.”

The U.S. engineered stone market is dominated by a handful of large brands — including Caesarstone, Spain-based Cosentino, and U.S.-based Cambria — while the volume of slabs imported from Asian manufacturers is growing.

Cosentino, too, is moving to low-silica products: “One third of the portfolio, including most new collections, contain less than 10% of crystalline silica,” said Kamela Kettles, a Cosentino spokesperson. “Cosentino will not be providing additional commentary at this time,” she said.

Commenting on behalf of Cambria, Mark Duffy, a communications consultant for the company, wrote, “Reckless employers are criminally violating the law, exposing workers to deadly working conditions.” He added that engineering and administrative controls, when properly used, are effective in reducing exposures below OSHA limits and said Cambria maintains exposures below the OSHA Action Level in its own facilities.

While Caesarstone and Cosentino are headquartered overseas, Cambria is based in Minnesota. Its chief executive, Marty Davis, has been a major Republican political donor, to President Donald Trump’s election campaigns as well as to other Republican candidates and political action committees, according to federal campaign finance records. Davis has also contributed to the campaign of Rep. Brad Finstad (R-Minn.), a co-sponsor of the legislation. Finstad’s office did not respond to a request for comment.

Nevin, the attorney, said the bill would give manufacturers “free rein” from civil liability.

He also questions whether regulatory enforcement alone can address the problem. Even before the Trump administration’s funding and staffing cuts, “you had a better chance of being struck by lightning than being visited by OSHA,” he said, arguing that inspections are too infrequent to prevent disease in an industry composed largely of small shops.

A worker at the Tipton shop begins production of a countertop in 2019. (Michael Conroy/AP)

Breathing on Borrowed Time

For González, the debate arrives after the fact. The dust he inhaled has already reshaped his life.

And Reyes’ transplanted lungs may last years, but not decades. The median survival time for transplanted lungs is about eight years, UCSF’s Gandhi said.

Reyes said he hopes people shopping for countertops understand that buying artificial stone “will harm the worker. The one who cuts it, the one who manufactures it.”

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