The officials, all Democrats, are running at a time when the Trump administration is reducing government funding for scientific research, restricting access to some vaccines, and making it more difficult for some Americans to obtain health insurance.

Shaughnessy Naughton, president of 3.14 Action, a political action committee that recruits Democratic candidates with science and health backgrounds, said it is unusual to see so many public health leaders running for office.

“But it’s not surprising given the moment we are living in, with an arsonist running HHS working to undermine the vaccine schedule and public health at large,” she said.

Health and Human Services Secretary Robert F. Kennedy Jr. is a longtime anti-vaccine activist who disparaged public health measures implemented during the pandemic, going as far as calling the covid vaccine the “.”

Neither HHS nor the White House responded to requests for comment.

Several of the candidates benefit from name recognition built during the covid pandemic, political science scholars say, when daily news briefings from local health officials became must-see-TV for many citizens sheltering in place from the novel virus. But that cuts two ways.

While many Americans regarded public health officials as offering prudent advice and a steady voice, others criticized them for pushing school closures, mask mandates, and new, quickly created vaccines. The attacks have escalated under President Donald Trump, with Republicans targeting pandemic-era public health leaders such as Anthony Fauci and a former Fauci adviser even facing .

National polls show healthcare is for many voters this year, with Democrats most worried about costs and Republicans about fraud. But that’s no guarantee of victory. Nirav Shah, an epidemiologist who led Maine’s top public health agency through the pandemic, lost a narrow Democratic primary in the state governor’s race in June.

Here are some of the public health officials on the ballot this year:

Xavier Becerra, Running for Governor in California

Becerra, who served as HHS secretary under President Joe Biden, is the highest-ranking former health official running this cycle. He won a crowded and expensive open primary and now faces Republican Steve Hilton, a British-born former Fox News host, in the general election.

Mark Peterson, a public policy professor at the UCLA Luskin School of Public Affairs, said with the pandemic in the rearview mirror, any judgment voters may have about the federal government’s response is more likely to reflect on Biden rather than Becerra, who has no medical background and maintained a low profile as HHS secretary.

Leading the nation’s health department as the pandemic lingered, Becerra focused more on expanding access to the Affordable Care Act and Medicaid, overseeing record numbers of people enrolled in the publicly financed programs during his tenure. He did face criticism over the processing and placement of a massive influx of migrant children at the U.S.-Mexico border, as well as his agency’s response to a baby 51ÊÓƵ shortage brought on, in part, by major product recalls.

Becerra has said he now wants to be California’s “healthcare governor,” a mantle outgoing Gov. Gavin Newsom tried to claim upon taking office in 2019.

Becerra’s campaign did not respond to a request for comment.

Before becoming HHS secretary, Becerra served as California’s attorney general and sued the first Trump administration more than 100 times, leading a coalition of states against GOP efforts to gut the ACA. He also started a unit in his office focused solely on healthcare. During Becerra’s tenure, his office reached a $575 million antitrust settlement with the California hospital system Sutter Health, pursued pharmaceutical companies that delayed generic drugs, and helped block a Trump administration rule that let employers choose whether to cover .

Voters often regard decades of experience in government as a negative, Peterson said. But for the job of running the nation’s most populous state and the world’s fourth-largest economy, he added, “I think there are a lot of people out there who would like to have somebody who actually has run a big enterprise.”

In , Becerra has said California should maintain state-funded Medicaid coverage for immigrants without legal status. He is also a longtime supporter of implementing single-payer healthcare, though in recent interviews he has said it needs to be addressed at the federal level.

Amy Acton, Running for Governor in Ohio

Acton ran Ohio’s health department from February 2019 to June 2020.

During the first months of the pandemic, Acton appeared at daily news conferences with the state’s Republican governor, Mike DeWine, that were jokingly dubbed “.” She earned fans with her calm and positive demeanor while explaining her approach to keeping covid at bay.

But she also attracted critics with her recommendations to stay at home, mask up, and shut down some businesses to curb the virus’ spread. Protesters even showed up at her home.

Acton’s Republican opponent in the governor’s race, Vivek Ramaswamy, has labeled her “Dr. Lockdown” on social media. His criticism of her role in shutting down businesses could prove effective with the economy at the top of many people’s minds, said Christopher Devine, a University of Dayton political science professor.

“It’s a double-edged sword, because she also really upset some people,” Devine said of Acton’s time as the health director during the pandemic.

He said that is a tricky attack for Ramaswamy to pursue, though, because DeWine — still the sitting governor and a popular conservative figure — endorsed the covid measures Acton recommended, granting her emergency powers to sign the orders, and has since said he takes all responsibility for those actions.

For her part, Acton has done little on the campaign trail to highlight her time as the state’s public health director. Instead, she has focused more on healthcare affordability, highlighting the Trump-led cuts to Medicaid and the scaled-back subsidies for ACA plans that have resulted in dropping coverage in the state.

“I hear from families across Ohio that healthcare costs are rising and they just can’t keep up,” Acton said in an emailed statement. “That’s why I will fight to protect and expand access, reduce the price of prescription drugs, forgive medical debt holding Ohioans back, and lower premiums.”

Abdul El-Sayed, Running for U.S. Senate in Michigan

El-Sayed — who ran the health departments in the city of Detroit and Wayne County, Michigan — is one of two leading Democratic candidates for Senate. The primary is Aug. 4.

El-Sayed, a progressive, is facing off against Haley Stevens, a four-term congresswoman. They are vying to run against Republican nominee Mike Rogers, a former congressman, for the Senate seat held by retiring Democrat Gary Peters.

From 2015 to 2017, El-Sayed ran the Detroit Health Department, which and privatized as part of the city’s 2013 bankruptcy. In his role, he led efforts to test Detroit schools for lead in the wake of the Flint water crisis and provide free eyeglasses to children in public schools.

From 2022 until 2025, he ran the health department in Wayne County, the state’s most populous county, which includes Detroit. In that job, he initiated a program to retire medical debt for thousands of residents and make naloxone available in public areas to reverse the effects of opioid overdoses.

In an interview with 51ÊÓƵ Health News, El-Sayed said his public health experience helped him become an effective communicator and challenge corporations and the role they play in healthcare.

“Politics have become overrun by big money and corporations, and my training and background in public health has taught me to think about that and push back against it,” he said.

El-Sayed, who did not practice medicine after completing his residency and is not licensed to do so, has faced criticism from some in his party for calling himself a doctor.  

El-Sayed, who has endorsements from Sen. Bernie Sanders (I-Vt.) and U.S. Rep. Alexandria Ocasio-Cortez (D-N.Y.), supports “Medicare for All,” a policy favored by many progressives that would make more people eligible for the federal health program for people who are 65 and older or disabled.

David Dulio, a professor of political science at Oakland University in Rochester, Michigan, said that the broader economy, Trump’s tariffs, and trade are eclipsing healthcare this year as top concerns for voters in the state. But he added that “progressive stances such as Medicare for All are attractive in the Democratic primary electorate.”

This article first appeared on 51ÊÓƵ Health News and is republished here under a .

Julie Rovner 51ÊÓƵ Health News Read Julie's stories. Julie Rovner is chief Washington correspondent and host of 51ÊÓƵ 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 Trump administration has conceded in court documents that it used purely political considerations to cancel grant funding previously approved by Congress. But that has provoked a surprisingly muted response from lawmakers, who under the Constitution control the power of the purse.

Meanwhile, Republicans in the Senate summoned former National Institutes of Health and White House official Anthony Fauci to testify — again — about his handling of the covid pandemic. Fauci, however, refused to answer questions, citing the advice of his attorneys.

This week’s panelists are Julie Rovner of 51ÊÓƵ Health News, Rachel Cohrs Zhang of Bloomberg News, Shefali Luthra of The 19th, and Liz Essley Whyte of The Wall Street Journal.

Panelists

Rachel Cohrs Zhang Bloomberg News

Shefali Luthra The 19th

Liz Essley Whyte The Wall Street Journal

Among the takeaways from this week’s episode:

• Recent court filings shed light on how the Trump administration has used politics to justify its decisions to cancel federal grants. While similar revelations may have been explosive under other presidents, the filings have triggered muted, if any, responses from lawmakers.
• The Trump administration announced this week that it would end the temporary Medicare Part D subsidies, introduced under the Biden administration, that help lower the monthly premiums older Americans pay for drug coverage. While next year’s premiums probably would have increased anyway, the change — which many will notice when they shop for plans later this year, shortly before the midterm elections — may not help Republicans in the voting booth.
• Meanwhile, Sen. Rand Paul (R-Ky.) brought Fauci before the committee he chairs to address accusations related to his role in the nation’s covid response as a key adviser to Presidents Donald Trump and Joe Biden. But little of substance was said, with the hearing quickly devolving into political grandstanding as Fauci asserted his constitutional right not to self-incriminate.
• An FDA advisory panel voted to recommend the agency make it easier for Americans to obtain several previously banned compounds known as peptides — even as FDA staff caution that there’s no evidence they are safe. The panel included members who stand to profit from expanded access to peptides.

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

Julie Rovner: The Arkansas Times’ “,” by Byron Tate.  

Rachel Cohrs Zhang: 51ÊÓƵ Health News’ “Trump Administration Demands Hospitals Share Emergency Room Records,” by Amanda Seitz, Maia Rosenfeld, and Darius Tahir.  

Liz Essley Whyte: Stat’s “,” by J. Todd R. Lawrence and Madison A. Kesler.  

Shefali Luthra: The Washington Post’s “,” by Aaron E. Carroll.  

 Also mentioned in this week’s podcast:

• The New York Times’ “,” by Tony Romm and Brad Plumer.
• CalMatters’ “,” by Mikhail Zinshteyn.
• The Wall Street Journal’s “,” by Liz Essley Whyte.
• Bloomberg News’ “,” by Rachel Cohrs Zhang.
• 51ÊÓƵ Health News’ “Trump Has Quietly Throttled an Agency Devoted to the Safety of American Healthcare,” by Arthur Allen.
• The Washington Post’s “,” by Lauren Weber.
• Politico’s “,” by Alice Miranda Ollstein and Ariel Wittenberg.

Credits

Click here to find all our podcasts.

And subscribe to “What the Health? From 51ÊÓƵ Health News” on , , , , , or wherever you listen to podcasts.

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Now, the same pain had returned — on the left.

This time, Rangel was in the U.S. and lacked health insurance. In 2019, he moved to Portland, Maine, where one of his daughters lives.

As a green-card holder, he qualified to purchase health insurance through the Affordable Care Act marketplace. But he quickly realized that the premiums for someone his age were beyond his budget. He decided to go without insurance, even though it had been a priority for him.

Instead, Rangel signed up for a plan at a concierge practice where patients pay as little as $70 a month for services, including unlimited office visits and minor procedures such as stitches and biopsies.

But when Rangel was diagnosed with a hernia, surgery became unavoidable. Ben Hagopian, his primary care physician, helped him compile a list of hospitals and surgical centers to consider. Rangel has a PhD in management, a field he pursued while serving in the navy in Venezuela. Armed with that knowledge and a naturally inquisitive mind, he began researching prices.

His efforts paid off when the bill came.

The Medical Service

Rangel had what is called an , which occurs when the contents of the abdomen bulge through a weak spot in the lower abdominal wall. The condition is relatively common, particularly among older adults.

In most cases, surgery is required to fix the muscle wall and can be performed . There are three main surgical approaches to repair an inguinal hernia: open, laparoscopic, and robot-assisted. Studies have shown that the three approaches have similarly low rates of hernia recurrence and are .

Rangel underwent an open repair, an approach often preferred by physicians for recurrent hernias. He said his operation lasted less than two hours, and he walked out of the surgical center shortly afterward.

The Bill

$2,900: The flat rate Rangel ultimately paid for his hernia repair at an outpatient surgery center in Maryland, including the surgeon’s fee and anesthesia. He said he also paid around $1,800 to travel to the surgery center from his home in Maine, including airfare, meals, and lodging for him and his wife.

The Billing Problem: No Insurance — But Time To Shop

Because Rangel did not have insurance, he had no protections from high costs — except time and his ability to shop for an acceptable price for his procedure.

Rangel’s first stop was a nonprofit hospital close to home. He scheduled a consultation with a surgeon with MaineHealth, the state’s largest health system, and received an estimate showing it would cost approximately $23,000 to repair his hernia laparoscopically.

Laparoscopic procedures generally cost more because surgeons use more advanced tools. Still, the average laparoscopic inguinal hernia repair costs nearly twice as much at a hospital as it does at an ambulatory surgery center for a patient , which pays $5,280 for the hospital-based option.

“I wasn’t going to mortgage my life just to have surgery and spend the next 30 years paying off the debt,” said Rangel, now 64.

So, he kept shopping. He considered a surgical center in Oklahoma that was far cheaper, but he ultimately ruled it out because it was so far away. He also explored traveling to Universidad de los Andes in Santiago, Chile, where another of his daughters lives. There, his hernia repair would have cost about $7,000, but once he added thousands of dollars in travel expenses, that option no longer made financial sense.

Gerard Anderson, a professor who analyzes healthcare spending at the Johns Hopkins Bloomberg School of Public Health, said patients without health insurance are often the ones hit hardest by wide price variations.

A closer look at any hospital bill helps explain why. “Every hospital is different,” he said, “but generally about half of the total charge is the facility fee,” a charge added to hospital care to help cover overhead costs.

Anderson said hospitals often mark up prices far more than smaller facilities do.

Medical billing researchers say the price gap between hospitals and ambulatory surgery centers partially reflects the higher overhead costs of operating a hospital.

Hagopian, Rangel’s physician, acknowledged that hospitals have higher administrative expenses. “But that doesn’t explain the high costs.”

MaineHealth declined to comment to 51ÊÓƵ Health News, directing questions about the hospital-based procedure’s cost to Jeffrey Austin, president of the Maine Hospital Association.

Austin said that, unlike surgery centers, hospitals must absorb the costs of providing “money-losing” services, such as behavioral healthcare and care for Medicaid patients. He added that revenue generated by large hospitals in a health system supports other facilities, improving access to care.

Hospital prices, which can vary widely, are also driven by negotiations with insurers and market concentration. For uninsured patients, those list prices can become the starting point for negotiations — or the full amount owed.

Anderson noted that standardized payment rates exist for Medicare and Medicaid but not for most privately priced medical services. “In the private sector, providers can charge whatever they want.”

The Resolution

Rangel has another daughter in Argentina, a son in Venezuela, and other family in Spain. But he decided to stop looking around the globe for a good price, because he finally found what he was looking for in Maryland.

In April, he traveled to the Affordable Hernia Surgery center in Rockville, where he said “an efficient, well-coordinated system” guided him through the entire process.

“I received professional and very human care,” Rangel said. He was fully recovered within two weeks, as his surgeon predicted, he said.

The surgery center charged Rangel a flat fee for his hernia repair. The added travel expenses for the two-day trip with his wife went toward airline tickets, transportation, meals, and one night in a hotel.

Rangel said he paid about $4,700 total.

Alan Kravitz, the surgeon who performed Rangel’s operation, said the price difference uninsured patients face compared with insured patients is far from fair. “In the predatory and strategic world of U.S. healthcare pricing, uninsured patients generally get charged more than providers would accept from Medicare or commercial insurance.”

Kravitz then pulled out an estimate another patient had received for an inguinal hernia repair from a different large health system. The price: $37,000.

The Takeaway

Without insurance, many patients are on their own to negotiate.

“With the help of their primary physicians, patients can dig into prices and compare their options to avoid falling into medical debt,” Rangel said.

That approach, however, is most feasible for elective procedures with several surgical options offering comparable outcomes.

Patients facing medical emergencies do not have the luxury of comparing prices before seeking care, though many hospitals offer cash-pay discounts or charity care for those paying without insurance.

Billing analysts say patients who do have time to shop should look beyond cost alone. They recommend checking the quality of hospitals and surgical centers by reviewing publicly available ratings and patient reviews. that higher prices do not necessarily translate into a better quality of care, but it’s also important to select a reputable care provider.

Comparison shopping for medical care can be time-consuming. But for patients facing elective procedures, the effort can pay off — sometimes saving thousands of dollars.

“This was a learning experience for me,” Rangel said, “and I hope it will be for other people, too.”

Bill of the Month is a crowdsourced investigation by 51ÊÓƵ Health News and that dissects and explains medical bills. Since 2018, this series has helped many patients and readers get their medical bills reduced, and it has been cited in statehouses, at the U.S. Capitol, and at the White House. Do you have a confusing or outrageous medical bill you want to share? Tell us about it!

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“I want to stay here,” she vowed. “And die here.”

She might pull that off. In relatively good health, Jennett still drives to lunch with friends, does her own housekeeping and grocery shopping, and plows through a book a day, usually a mystery. But her children worry about her living alone at 89, especially after she has had a couple of falls.

Enter her new housemate, Susan Beese. Despite working four days a week in retail, Beese could no longer afford her nearby one-bedroom apartment as the rent topped $1,500 a month. She moved out, first staying with friends and then in what she delicately called “a senior women’s facility.”

Now Beese, who is 79, pays Jennett $800 monthly for a bright two-bedroom space, with a bath and a kitchen, on the lower level of her house. As part of the agreement the housemates worked out, she helps plant and water Jennett’s garden, takes out the trash, and cooks occasional meals.

“It’s been a lifesaver,” Beese said. Jennett even welcomed her dog.

Meet the real-life Golden Girls. In the  1980s sitcom, still in perpetual reruns, the four wisecracking women who share a house in Miami met through an ad on a supermarket bulletin board.

In Denver, the housing matchmaker was Sunshine Home Share Colorado, a local nonprofit that Alison Joucovsky, a senior services administrator, founded in 2016 when the problem became urgent. “My phone was ringing off the hook,” she said, recalling anxious pleas from older residents spending most of their Social Security checks on rising rent or facing years-long waiting lists for subsidized senior housing.

Home sharing “is a really efficient way to create affordable housing and to support older people ,” Joucovsky said. Carefully vetting both “home providers,” who may be rattling around in family houses now too big and too empty, and “home sharers” seeking reasonable rents, Sunshine facilitated 31 shares last year, a record for the nonprofit.

“The cost of developing and building new housing is astronomical, and so is the length of time it takes,” said Laura Fanucchi, president of the National Shared Housing Resource Center and an administrator with HIP Housing, a home-share organization in San Mateo County, California. “Why not make use of existing housing stock?”

About  offer these services — and demand is growing, driven by housing shortages, rising rents, and sales prices that affect both the old and the young. Legislators in several states are working to promote home sharing as an option. (Personal care is not part of these arrangements.)

The need is acute. About a third of households headed by someone 65 or older were “cost-burdened” in 2024, according to  by the Harvard Joint Center for Housing Studies. That means they spent more than 30% of their income on housing.

Although nearly 80% of those people were homeowners, the center found, an increasing proportion are still paying off mortgages or home equity loans, and most contend with higher taxes, utility and maintenance costs, and insurance premiums.

“A lot of the people calling me to complain about property taxes and inflation are senior citizens on fixed incomes whose children have left, and maybe their spouse has died,” said Pennsylvania state Rep. Abby Major, a Republican co-sponsor of a bill that would facilitate home sharing. “They’re a single older adult living in a four-bedroom house.”

Yet most don’t want to relocate. Even if they do, many older adults will find that downsizing has also  as home prices rise and very low interest rates become a memory.

Younger people are similarly cost-burdened, including 37% of those age 25 to 34 and 31% of those 35 to 44, the Joint Center has reported.  both older homeowners who need income and people of any age in search of lower-cost housing.

To help increase their reach, some home-share programs now supplement or replace the traditionally labor-intensive matching process with online platforms. (For-profit companies like Nesterly or roommates.com also facilitate shared housing.)

“It’s like online dating, except that people who have rooms can meet people who need rooms,” said Candice Smith, executive director of HomeShare Oregon. “And it’s a lot more secure.” HomeShare’s online platform has drawn close to 7,000 providers and seekers over five years.

Further support has come from the city of Portland, which this year announced  to pay $1,000 to homeowners who make a spare room available (or $1,500 for two rooms) through qualified home-share programs.

In addition, legislators in several states have introduced or passed bills that prohibit municipalities from unduly restricting homeowners who want to rent spare rooms to nonfamily members. Sponsors in Pennsylvania and Connecticut actually call them Golden Girls bills, and they’ve drawn bipartisan support.

“So many young people have basically given up on buying a home,” said Colorado state Rep. Manny Rutinel. The Democrat helped pass  prohibiting cities and counties from limiting the number of unrelated people who could live together in a single dwelling.

In Pennsylvania, state Rep. Tarik Khan steered  through the House in June; it awaits a Senate vote. “It doesn’t make sense that your cousin can move in but someone unrelated to you can’t,” said Khan, a Democrat.

The Pennsylvania bill caps the number of nonfamily occupants in a home at five; Connecticut’s limit would be three.  passed the Senate in April and then died without a vote in the House. But the bill sponsors plan to reintroduce it next session.

Home sharing can’t solve the housing crisis, its fans acknowledge. But it could make a dent, potentially unlocking thousands of spare bedrooms across the country without requiring new construction that would change the character of neighborhoods.

Admittedly, matching homeowners with those who want to rent a room becomes a delicate process. Home-share staff members typically interview the individual parties, run background checks, verify incomes, coordinate initial phone calls and meetings, and mediate if problems later arise.

They also help applicants sift through the myriad lifestyle preferences that can torpedo a match. “Living together isn’t easy,” Fanucchi said. Will the home provider accept smokers, pets, visitors? Does the sharer work from home? Or need to park a car? Who sets the thermostat?

Sometimes the agreement includes a “service exchange,” in which the newcomer does a few hours of chores like snow shoveling, shopping, or some meal preparation in return for reduced rent.

Jenlyn and Larry Boyer, for instance, have lived in their ranch house in suburban Broomfield, Colorado, for 31 years and never want to leave. But Jenlyn, who is 80, has “gotten unsteady” and uses a walker. Her husband, 70, suffers chronic fibromyalgia pain and needs a wheelchair.

Because they now pay for tasks that they used to undertake themselves, and because inflation has undermined their finances, “I had an epiphany,” Jenlyn said. “We need more help and we need more money.”

Six months ago, through Sunshine Home Share, they met a 46-year-old graduate student whose monthly rent had doubled to an unmanageable $2,000.

The student moved into their furnished downstairs bedroom/family room with a bathroom, a small refrigerator, and a microwave. In exchange for about 10 hours of dishwashing a month, she pays a reduced rent of $600.

The additional income has helped the Boyers cover expenses like van repairs and wheelchair batteries. But they also enjoy chatting with their new housemate.

“She turns out to be just a gem,” Jenlyn said. “We laugh together a lot.”

The New Old Age is produced through a partnership with .

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The Office of Personnel Management posted last month that it will begin routinely collecting identifiable, personal health information on more than 8 million people — despite concerns from privacy advocates and Democrats, who have demanded the agency drop the plan. The notice will go into effect July 24, allowing OPM to begin its collection at any point afterward.

In reaction to privacy concerns raised by insurers and others, OPM now says the identities of enrollees will be “pseudonymized” — meaning names, addresses, and Social Security numbers will be removed — before the agency’s analysts review the massive new health datasets it will soon begin receiving.

Birth years of enrollees will be retained, and the agency’s “technical staff” will receive member IDs that it will scramble into different, unique numbers before releasing them to other staffers, according to the notice.

But the notice also specifies that OPM retains the right to reidentify the records.

Sixty-five insurance companies will be required to routinely send OPM detailed data — including names, addresses, doctor information, diagnoses, prescriptions filled, and payment details — on health care services paid through the Federal Employees Health Benefits and Postal Service Health Benefits programs.

In a change to its original proposal, first reported by 51ÊÓƵ Health News, the agency says it also wants to peek at records kept by Medicare, the federally funded health insurance for older and disabled Americans, to examine claims from federal employees and retirees, and their families, who depend on both programs.

In its latest notice, OPM argues that the vast trove of data is necessary to ferret out fraud and overpayments in the FEHB and PSHB programs. Those programs cost roughly , with about $50 billion covered by the federal government and $30 billion funded by enrollees. The Trump administration has ramped up efforts, led by Vice President JD Vance, to curtail what it says is rampant fraud and misuse of publicly funded health benefits.

The effort still faces criticism that it doesn’t go far enough to protect the privacy of federal workers and their families.

“Clearly, this administration has not earned our trust with Americans’ sensitive data,” Sen. Mark Warner (D-Va.) said in an emailed statement to 51ÊÓƵ Health News. “If OPM wants to work in good faith to reduce fraud, they should come to Congress, including to folks like me who are engaged on this issue and represent many federal workers and retirees and their families, and work to build consensus and trust before implementing these sweeping changes.”

The , posted in December, sparked concerns in part because it did not specify what the Trump administration planned to do with the sensitive health information it receives — and did not instruct insurers to redact identifying information.

OPM General Counsel Kurt Dykstra said the detailed records are critical to the administration’s mission of rooting out fraud and could help identify fraud perpetrated not only by medical providers but also by enrollees.

But when pressed for instances of workers, retirees, or their relatives committing such fraud, Dykstra only noted generally that healthcare fraud does occur.

The information could demonstrate “potential anomalies in usage patterns that could be related to the individual, but really also could be related to the provider, the treater, the clinic — whoever it is that’s actually providing the care,” Dykstra told 51ÊÓƵ Health News in an interview.

Records deemed suspicious by OPM’s data analysts could then be referred to the agency’s Office of the Inspector General for further investigation, which could include “determining who’s involved and what the potential issues are, what the ramifications look like,” Dykstra said.

OPM’s plan to collect and analyze medical records has prompted unease among unions and federal workers, to mass firings and layoffs — in some cases, they say, driven by political retribution — since President Donald Trump took office.

Health privacy lawyers say, too, that while pseudonymizing workers’ details is a step in the right direction, it might not go far enough to protect their privacy.

OPM’s notice mostly complies with the Health Insurance Portability and Accountability Act, the federal law commonly called HIPAA that protects sensitive health data from being shared, said Matt Fisher, a health privacy lawyer. But he noted one exception: The member ID that insurers provide enrollees can be used to identify them.

“The described process arguably comes down to trusting internal controls in OPM to ensure that data is walled off as proposed,” Fisher said in an email. “The ideal would be for only truly de-identified information to be shared in the first place.”

Insurers regularly share information about claims with employers who offer health plans to employees, in efforts to control costs. But since employers themselves are not covered by HIPAA, large datasets are typically de-identified, meaning the insurers remove identifying information such as employees’ names or addresses, to comply with the law.

Employers, too, have been accused of using health information to target employees for dismissals. Most recently, a group of Meta employees filed a lawsuit of using artificial intelligence to target for layoffs those who had taken medical or family leave.

Pseudonymizing details such as names or addresses would go only so far to protect privacy, since medical conditions in particular can make it very easy to identify certain employees, said Joseph Lorenzo Hall, a technologist at the Center for Democracy & Technology, a nonprofit that advocates for data privacy.

“The richer the data, the more likely it is going to be identifying,” Hall said.

“In this case, you may be the only person in a region that has that particular kind of medical procedure, condition, or even prescription,” he said. “All of those things can be extremely identifying, even when you remove or obfuscate or pseudonymize direct identifiers.”

Most federal retirees decide to continue with FEHB plans and enroll in Medicare once they turn 65, which provides more comprehensive coverage and allows family members to remain enrolled in FEHB plans, said John Hatton, the staff vice president for policy and programs at the National Active and Retired Federal Employees Association.

OPM wants to analyze medical records for those dual enrollees as well. The agency is asking for all of their cost and service use records from the Centers for Medicare & Medicaid Services.

Still, Hatton said, OPM’s latest notice provides more details about how the agency says it will use the sensitive health information it receives and safeguard it.

“It’s a big improvement over the last notice, which was very lacking in detail and explanation for why they wanted all the medical claims data and how they’re going to protect the privacy of the data,” Hatton said.

“We’d be open to seeing even more security around the privacy of the data so there really is a clear wall,” he added.

This article first appeared on 51ÊÓƵ Health News and is republished here under a .

Her team tends to “cringe” anytime they hear about patients having to fill out lots of paperwork, like when applying for Social Security Disability payments, because it can be a difficult, burdensome process.

Thornton tries to support her patients, she said, but understands the limits of her training.

“A lot of times the forms are so complex that I don’t really know what’s the true definition of what this form is asking me,” she said. “We refer them to a disability provider.”

Doctors including Thornton worry they’ll see more of those kinds of requests because of coming changes to Medicaid, the government health insurance program for people with low incomes or disabilities. Starting Jan. 1 in most of the country, some enrollees — mainly adults without dependents — must prove they’re working or performing other qualifying activities 80 hours a month.

issued in June say people can obtain an exemption if they’re “medically frail,” or too sick or disabled to work, which may require them to submit documentation from a medical professional. That standard prompted a lawsuit at the end of June from dozens of mostly Democratic-led states and has Thornton worried it could force her and her staff to assess things like how much a patient can lift or how far they can walk.

“If I’m asked, ‘Is this person medically frail?’ What does that even mean?” Thornton said. “I don’t know, and I’ve been doing this for 25 years.”

Last year’s GOP tax-and-spending law known as the One Big Beautiful Bill Act established the work rule, which will affect an estimated when more states start enforcing it. The mandate is expected to cause a larger increase in the number of people without health insurance than any other part of the law, a health information nonprofit that includes 51ÊÓƵ Health News.

Doctors say they aren’t trained to accurately assess whether someone’s health keeps them from working. Many don’t have time to handle another administrative task that takes them away from patient care. And being involved in whether someone gains access to a public benefit undermines the doctor-patient relationship, several doctor groups and physicians said.

“When you introduce unnecessary, non-evidence-based, confusing, and bureaucratic policies like this into clinical care, it just raises the level of moral distress for providers,” said Christopher Chen, a senior healthcare adviser at the consulting firm Manatt.

The Centers for Medicare & Medicaid Services declined to respond on the record about doctors’ concerns. But the agency confirmed that enrollees may need to get documentation from a clinician to prove they’re too sick to work and said states would make final determinations.

The Trump administration has previously said states should use available data sources — such as medical claims and payment data — before making patients submit proof of medical frailty from a provider.

“Documentation should be relatively easy to provide,” Mehmet Oz, the CMS administrator, said during a June 1 press call.

But deciding whether a patient is too sick to work is a subjective, high-stakes decision, said Chen, who also practices as a hospitalist at Valley Medical Center in Renton, Washington.

“We’re trained to take care of people,” he said. “We’re trained to learn about someone’s symptoms, make diagnoses, treat them. We’re not trained to make these kinds of work determinations.”

When they apply and every six months after, Medicaid enrollees subject to the rule will have to prove that they’re performing the minimum monthly hours of qualifying activities — or will likely have to prove as frequently that they qualify for an exemption.

If states can’t find sufficient evidence that someone is too sick to work, that person will be able to self-attest to it under penalty of perjury — but only for a short time. States may take someone’s word that they’re medically frail twice in 2027 and only once in 2028.

Last month, 25 mostly Democratic-led states over the final regulations, arguing the medical frailty standard would be too hard for enrollees to meet — and for states to assess.

The standard, they argue, requires state Medicaid agencies to “take on the role of occupational medicine experts” or adds that burden to physicians who are not necessarily trained in occupational medicine.

CMS declined to comment on the litigation.

The Trump administration has crusaded against fraud in government health programs including Medicaid. It recently — including medical professionals — over more than $6.5 billion in alleged fraud schemes.

CMS has said it will keep a close watch on how states administer the work requirements and may take corrective action if states step out of line.

That has doctors concerned about the potential repercussions if they incorrectly assess whether someone is too sick to work, as farfetched as those worries might be, said Rahul Vanjani, a primary care and addiction medicine physician and researcher at Brown University.

“We, using our imaginations, wonder if someone is auditing these forms in the background and if they’re going to reach out to the licensing board.”

The country is short of primary care providers, and it could be hard for people seeking an exemption to find a clinician to help them document that they’re too sick to work, doctors said.

It will be even more challenging for someone without insurance, said Jennifer Wagner, who researches Medicaid eligibility at the left-leaning Center on Budget and Policy Priorities.

“How could an applicant who doesn’t have health coverage get a doctor’s note?” she asked.

The American Medical Association, the nation’s largest professional association of doctors and medical students, lobbied federal officials to change the standard for documenting medical frailty in the days before the final regulations were made public.

In May, the AMA sent to Oz, the CMS administrator, arguing that forcing doctors to attest to their patients’ ability to work wouldn’t just be an administrative headache but would affect the way they interact with those in their care.

In a statement, the association’s president, Willie Underwood III, said the work rule “transforms the clinical encounter into an eligibility gatekeeping process.”

“Patients will likely sense that shift,” he said. “And if they begin to suspect that what they share with their physician could affect their coverage, the conditions for open and honest communication will start to break down.”

Doctors have a fixed amount of time to spend with patients and would rather focus on treating medical conditions than filling out forms, especially ones that put them in a position to “represent the state,” said John Ayanian, an internal medicine physician and researcher at the University of Michigan.

“Their first obligation is to serve the best interest of their patients,” Ayanian said.

Lauren Davis, an attorney with Community Legal Services of Philadelphia, helps clients navigate other public benefit programs, such as the Supplemental Nutrition Assistance Program, which has a similar work rule. Enrollees can get an exemption from it if they’re too sick to work.

She recalled a client with a cognitive condition that affected her memory. The client’s doctor wasn’t comfortable filling out an exemption form without seeing her in person, but she kept forgetting to make an appointment and eventually gave up, said Davis, who worries Medicaid enrollees could face similar barriers to getting exemptions.

“This person is eligible,” Davis said. “The reason that they’re not able to get what they need to show that they’re eligible is because of their medical condition.”

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Meanwhile, patients, their advocates, and clinicians say little has improved.

“It has never been this bad for patients,” said U.S. Rep. Greg Murphy (R-N.C.), a physician who co-chairs the GOP Doctors Caucus.

The overarching intent of the June 2025 pledge was to improve a controversial process called prior authorization, which regularly requires patients or someone on their medical team to seek approval from insurers before proceeding with treatment.

According to AHIP, the health insurance industry trade group, health plans have eliminated 6.5 million prior authorizations for patients — equal to an 11% reduction — since the announcement.

But critics remain skeptical. Sally Nix, a patient advocate who has a chronic disease, described the voluntary pledge as “performative.” And Murphy, who participated in the news conference with Health and Human Services Secretary Robert F. Kennedy Jr. announcing the pledge last year, said it has “no teeth.”

Voluntary insurer pledges rarely make things better for patients, said , a research professor at the Center on Health Insurance Reforms at Georgetown University.

“In the absence of clear rules, policies, standards, and mandates,” she said, insurance companies are “going to do what makes sense for them to do financially.”

The Department of Health and Human Services did not respond to questions for this report. It isn’t clear how, or whether, the Trump administration is holding insurers accountable.

‘Zero Faith’

Prior authorization — sometimes called preauthorization or precertification — has been around for decades. The insurance industry has long argued that the practice, which varies by company, helps control costs, reduces waste and fraud, and prevents potential harm to patients. It’s regularly invoked for a huge swath of services, ranging from low-cost urgent care to expensive cancer treatment.

“Prior authorization is a vital patient safeguard,” said Chris Bond, a spokesperson for AHIP.

The 2024 killing of UnitedHealthcare CEO Brian Thompson sparked a national groundswell of anger about insurance denials, with patients and doctors becoming increasingly vocal about the tactics they say insurance companies use to boost profits at the expense of care.

Prior authorization reform is one of the rare healthcare issues Democrats and Republicans tend to agree on. On July 15, the House Ways and Means Committee unanimously that would force Medicare Advantage plans to provide to the federal government a list of all items and services that are subject to prior authorization, and to report data about denials and grievances, among other requirements.

Last year’s industry pledge was organized as a direct response to public anger, Mehmet Oz, administrator of the Centers for Medicare & Medicaid Services, said when it was announced. “There’s violence in the streets over these issues,” he said.

“Americans are upset about it,” Oz said, later adding, “I’m looking forward to seeing the results.”

Mike Gartner, founder of Health Access Innovation, an organization that helps patients overturn insurance denials, said he doubts that insurance companies are changing their policies in meaningful ways. The 11% reduction in prior authorization cited by AHIP “hides a lot of nuance,” Gartner said.

Patients who need the costliest services, such as cancer treatment, are still being disproportionately denied access to doctor-recommended care, he said.

AHIP said its data included reductions in prior authorization for medical services, not prescription medicines. The trade group didn’t provide details explaining which services have been dropped from prior authorization or how those reductions differ across individual insurers.

Last year, Oz said the federal government would be “evaluating progress” toward the pledge and “driving accountability,” and he foreshadowed “public dashboards.” But no such dashboards exist, and federal officials did not respond to questions about how they’re holding companies accountable.

Murphy, the North Carolina congressman, said he has “zero faith” in the industry policing itself.

He didn’t believe insurance companies then, he said, “and I don’t believe them now.”

‘At War’ With an Insurer

In February, days after Betsy Adler and Justin Young’s daughter Coco was born with a serious heart defect, the Stillwater, Minnesota, family received paperwork showing they were racking up out-of-network costs.

During Adler’s pregnancy, the family had switched insurers, , which is based in Minnetonka, Minnesota, and one of that initially signed the industry pledge. Adler said she’d checked with her employer’s human resources department and on Medica’s website to make sure her maternal-fetal specialists and hospital were in-network before their new health plan went into effect earlier this year.

But then, the insurance company started processing some claims as out-of-network. By mid-March, the family had accrued more than $4,000 in out-of-network charges, on top of more than $3,000 for in-network bills. And the bills kept coming.

When Adler, a psychotherapist, called to figure out what was going on, she said, an insurance company representative said she hadn’t submitted a referral from her primary care provider beforehand. Attempts to fix the problem went nowhere. At one point, Adler said, Medica required her to visit a clinic she’d never been to before to obtain a referral. But she said a Medica representative told her the referral was never received, because the insurer’s fax machine was down.

“I have a critically ill child,” Adler remembered thinking shortly after Coco was discharged from the cardiovascular intensive care unit. “I can either spend my emotional energy at war with Medica, or I can let it go and just enjoy my time with my daughter.”

Medica spokesperson Greg Bury said he wouldn’t discuss the case, citing patient privacy rules. In an emailed statement, he wrote the company is “committed to working with her to ensure she understands what is covered under her benefits and our responsibilities.”

One of six specific promises all insurers made when they signed the pledge was to honor a 90-day grace period when patients switch insurance plans, starting Jan. 1 of this year. Often called “continuity of care,” this grace period allows patients to temporarily continue receiving services and medications that were authorized under a previous insurer.

But that applies only in some circumstances, Georgetown’s Corlette said. The wording of the pledge suggests that insurance companies aren’t obligated to honor another company’s network parameters. When Adler and Young switched insurers, for example, Medica was not obligated to cover the cost of out-of-network providers as if they were in-network, even though they were in-network under the family’s old plan.

Adler and Young switched insurance companies again when Coco was a month old, to avoid accruing more out-of-network costs.

Denial After Approval

The percentages cited by AHIP don’t tell the whole story, said Nix, the patient advocate. Insurers are “not including the data for the loopholes they create,” she said.

For example, nothing in the pledge prevents insurance companies from retroactively denying payment, even when care is preapproved. “Patients are going to see a lot more retroactive denials,” said Nix, who recently had her insurer process, then later deny, a claim for injections to relieve her nerve pain.

Something similar recently happened to Jocelyn Austin, 49, of Amherst, New York. Over the course of nearly 20 years, she developed an addiction to sleeping and anxiety pills prescribed to her by a doctor. Last year, she spent weeks at an inpatient treatment center for substance abuse. Her insurer, Independent Health, had approved the admission. Austin said she has been substance-free since her discharge.

But the facility sent her a bill for more than $12,000 in December showing her insurer had not paid for the treatment she received, according to documents Austin shared with 51ÊÓƵ Health News. This was in addition to the $10,000 she paid at the beginning of her treatment to satisfy her out-of-network deductible. The approval letters from Independent Health had specified that “authorization is not a guarantee of claim payment.”

Frank Sava, a spokesperson for Independent Health, said a denial was issued and upheld in this case because the services provided “were inconsistent with the care that was authorized” and “the medical record did not sufficiently support what was billed.” He said those findings were reviewed and confirmed by an outside consultant.

An explanation of benefits issued by the insurer last summer indicated the “provider,” not the patient, was responsible for the cost of her treatment. And yet the treatment facility has continued to pressure her for payment, she said.

Austin, who has not paid her outstanding bill, said insurance companies “should be held accountable.”

‘Significant Work Ahead’

Another one of the six commitments insurers made last year was to adopt new technology that would standardize the electronic submission of prior authorization requests. During the news conference announcing the pledge last summer, Chris Klomp, the director of Medicare and a deputy CMS administrator, said more than 50% of prior authorizations are still paper-based and processed by phone or fax machine.

In April, AHIP related to that technology initiative, explaining that participating insurers would adopt the new standards on a rolling basis. Health insurers agreed to implement the pledge’s various commitments by predetermined deadlines, and this initiative is scheduled to be operational by Jan. 1, 2027. But eight insurers that initially signed the pledge last year didn’t sign the technology update when it was announced in April, AHIP told 51ÊÓƵ Health News.

Those insurers are Alignment Health Plan, EmblemHealth, HealthFirst, Independent Health, Medica, MVP Health Care, Point32Health, and SummaCare. Their beneficiaries span the country, from California to New York. None of those eight insurers agreed to interviews for this report, but most sent 51ÊÓƵ Health News emailed statements indicating that they remain committed to prior authorization reform.

AHIP’s approach to continuity of care “would have required the transfer of confidential member health information through a non-standardized process involving third-party participation,” wrote Jerry Slowey, a spokesperson for , which offers Medicare Advantage policies in Arizona, California, Nevada, North Carolina, and Texas. “We do not believe that level of data sharing was contemplated in the original commitment.”

Bury, the spokesperson for Medica, which covers beneficiaries in Iowa, Kansas, Minnesota, Missouri, Nebraska, North Dakota, Oklahoma, South Dakota, and Wisconsin, said the company “supports the goal of these standardization efforts.” But the April update “raised a significant technical and operational hurdle that we are not able to commit to at this time,” he said.

Alex Gomez, a spokesperson for EmblemHealth, said in late June the company “will sign onto the commitment” after 51ÊÓƵ Health News posed questions about why it had not endorsed the April update.

“We anticipate more plans will be added over the coming months,” said Bond, the AHIP spokesperson. Health plans are “working continuously to implement their commitments to simplify and improve the experience.” He acknowledged that “there is still significant work ahead.”

The original pledge also included a promise that insurance companies would enhance transparency and use “clear, easy-to-understand explanations” when communicating to patients — something they were already supposed to be doing under the Affordable Care Act.

Yet companies still regularly neglect to explain why care has been denied, and their communications often contain “inconsistent and contradictory information,” said Gartner, of Health Access Innovation. He and Murphy also said they suspect insurance companies are increasingly using artificial intelligence to generate denials.

“They craft the pathways to basically deny things immediately with the hope that people will give up,” Murphy said.

The congressman said he wishes President Donald Trump would sign executive orders addressing some of these issues. “The problem is the insurance industry is the strongest lobby in this town.”

Do you have an experience with prior authorization you’d like to share?  to tell 51ÊÓƵ Health News your story.

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California lawmakers an expired law that would require the state to identify companies that employ 100 or more people and have employees enrolled in Medi-Cal, the state’s Medicaid program. Nevada has had a similar law in place since 2017, though a proposal for one in Oregon stalled when its legislative session ended in March.

The California bill author, Democratic state Sen. Lola Smallwood-Cuevas, said she is deeply troubled by what is going to happen when work requirements kick in. According to the state, out of more than on Medi-Cal will be subject to the rule.

“We think this is a bill that’s about fairness,” Smallwood-Cuevas said. “It’s a basic principle that taxpayers deserve transparency about which large employers are shifting their healthcare costs onto the public.”

Large employers that regularly top Nevada’s list, such as Walmart and Amazon, have said that the state included part-time and seasonal workers in their counts and that their full-time hourly employees to qualify for Medicaid.

Walmart spokesperson Katrina Proffitt said that the company offers affordable medical coverage to most employees, including eligible part-time workers, and that most of its plans include no-cost virtual care options.

“Healthcare affordability and access to quality care remain real barriers for many Americans, and Walmart continues to be committed to being part of the solution,” Proffitt said.

The push to name and shame companies reflects dueling narratives about the biggest abusers of the joint state-federal Medicaid program, which reached nearly in government spending in 2024. The Trump administration, led by Centers for Medicare & Medicaid Services Administrator Mehmet Oz, has called out blue states for not doing enough to fight insurer fraud and abuse. State Democratic leaders, meanwhile, are pushing back by calling attention to big employers that don’t offer affordable health benefits, which leaves taxpayers subsidizing healthcare costs for the low-wage workforce.

Some states have considered financial penalties. Democratic New Jersey Gov. Mikie Sherrill signed a bill in June that have at least 50 Medicaid-enrolled employees. Companies with 50 to 249 workers on Medicaid per person, and those with at least 500 will pay $725.

Bills that would have penalized companies with workers enrolled in Medicaid failed in this year.

In Sacramento, California, Democrats want to figure out a way to make large businesses pay for their employees’ health coverage. State lawmakers struck a deal with Democratic Gov. Gavin Newsom, who is contemplating a presidential bid as he wraps up his final year in the governor’s office, to explore tax options. Any tax hike would be up to the new governor.

States face of dollars under HR 1, the GOP tax-and-spending law known as the One Big Beautiful Bill Act, notably through that requires nondisabled Medicaid enrollees ages 19 to 64 in most states to prove they are working, volunteering, or going to school at least 80 hours a month to keep their coverage.

Yet federal work requirements are projected to increase the number of uninsured people nationwide by more than 5 million by 2034, according to the . Nebraska and Montana have begun enforcing the rule.

One health policy researcher said employer Medicaid reports highlight the lack of affordable healthcare options available to low-wage workers. More than half of adults enrolled in Medicaid who don’t have dependent children already meet the 80-hour-a-month requirement or face challenges that would likely qualify them for an exemption, .

“There’s a whole set of people who are working — they may not satisfy the work requirement provisions, they may not get the exemption that they’re qualified for, and they don’t have access to that employer-sponsored insurance either,” said Edwin Park, a research professor at the Center for Children and Families at Georgetown University.

Employers Push Back

While employer lists haven’t succeeded in bringing down Medicaid costs, supporters say measuring the burden can be the first step and help lawmakers make the case for further action.

In Nevada, Amazon has employed more Medicaid enrollees than any other company since 2020, according to the state’s report . For state fiscal year 2025, Walmart, the Clark County School District, the state government, and Tesla rounded out the top five.

Employers that the reports are misleading because they have included part-time and seasonal employees. The state’s includes only full-time employees, plus those who could not be confirmed as either full- or part-time employees.

That came to 4,914 Amazon employees and 3,503 Walmart workers in Nevada on Medicaid in 2025.

There are no penalties for companies on the list.

Amazon said it pays its workers more than double the $7.25-an-hour federal minimum wage and noted that Medicaid eligibility is based on household income and size rather than an individual’s wage. That means two employees who earn the same pay may have different eligibility depending on whether they have children or live with parents.

“Pointing fingers at Amazon over Medicaid is a red herring,” said spokesperson Alisa Carroll. “What really needs to happen is a significant and large increase in the federal minimum wage — that would be a big boost for American families.”

Nevada Medicaid spent nearly $950 million on healthcare for more than 133,000 full-time employees and more than 140,000 of their dependents. While the total amount spent dipped in fiscal year 2025, the average cost per member per year increased by nearly 17%.

Yvanna Cancela, a former Nevada lawmaker who sponsored the legislation on Medicaid work reports, said the annual reports force an important conversation “about whether or not this is the kind of economy we want and whether or not it is right or just that people who work full-time don’t make enough to have health insurance.”

A Fraying Safety Net

Health researchers say that uninsured people delay or skip and that their children may end up losing coverage, too.

One analysis found that more than were enrolled in Medicaid and the Children’s Health Insurance Program this April than in January 2025. California is among the states with the among children.

The loss in healthcare coverage among residents will be compounded by the loss of public food assistance benefits, Smallwood-Cuevas said. is pending in the legislature.

She compared Medi-Cal to a trampoline that has become a “very tattered kind of fishnet” overwhelmed by people falling into it. President Donald Trump’s spending-and-tax law pulls and rips at the safety net, she said.

When people lose food assistance and health benefits, they must choose between paying for medicine and paying for rent, Smallwood-Cuevas said.

“We’re going to see more people in their cars, more people on the street, and a lot more people in the emergency room,” she said. “That is dangerous for all of California.”

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“On a scale of 1 to 10 of my annoyance with taxes in general, this one is about a 2,” she said. “I see the benefits.”

The small surcharge on wages provides the funding for Washington Cares, the nation’s . It was set to begin distributing benefits July 1.

If Haggett, 67, a systems administrator who lives in Auburn, Washington, needs help with daily activities as she ages — bathing, dressing, grocery shopping, managing medications — she’ll be able to use the benefit she has accrued through WA Cares, as the program is known.

About 3.7 million workers participated last year, paying an additional 0.58% in payroll taxes. Those who contribute for 10 years will qualify for a lifetime benefit of $36,500. The amount will rise with inflation: A 36-year-old now earning about $50,000 a year who contributes $291 a year for a decade will have if she needs assistance at age 75.

Both the WA Cares mandatory premiums and eventual benefits are modest. But for older adults and people with disabilities, they can help pay for a variety of services: home care, transportation, adult day programs, home modifications like ramps and grab bars, compensation for family members who assist them, or assisted living facilities and nursing homes.

Haggett had looked into private long-term care insurance to cover those needs, but she balked. “It’s crazy expensive,” she said. And since premiums can rise, and frequently have, “you’re basically saying, I’ll pay whatever, whenever.”

Haggett knows that WA Cares can’t cover all her long-term care costs. In fact, because she was already in her 60s when payroll deductions began in 2023, and because she is planning to retire in two years, she’ll receive only half the lifetime benefit.

But “if I required care and it would protect my wife from having to spend our savings, $18,250 is not meaningless,” she said.

Washington has been working toward implementing WA Cares for a decade; the program has survived two statewide votes aimed at overturning or weakening it. Now, other states will be paying attention.

‘Most People Have Nothing’

An estimated 70% of Americans will need long-term care at some point in their lives, but “they haven’t planned for it or saved for it,” said Cathleen MacCaul, advocacy director for AARP Washington State, which supported the legislation that created WA Cares.

“People are under the misconception that Medicare will pay for this,” MacCaul said. In fact, while Medicare pays for healthcare, it rarely covers long-term care, either at home or in facilities.

Medicaid does cover long-term care, but it involves such strict limits on income and assets that “most middle-class people are left out, or they have to impoverish themselves” by spending nearly all their assets to qualify, said Richard Frank, director of the Center on Health Policy at the Brookings Institution. Those who are eligible often face lengthy waiting lists for care at home.

“Long-term care is the largest area of unprotected health risk in the United States,” Frank said. “Most people have nothing.”

Previous efforts to establish public long-term care protections have foundered. In 2010, the Affordable Care Act included , a legacy of Sen. Ted Kennedy that would have created a voluntary long-term care insurance program. The Obama administration eventually deemed it unworkable, and “it never saw the light of day,” Frank said.

The private market has also contracted. Most of the largest companies selling long-term care insurance — Genworth, John Hancock, MetLife — have exited the market. The return on their investments plummeted when interest rates fell after the Great Recession, and the number of insured people who abandoned their policies — a profitable development for insurers — was far below projections.

“The psychology of the industry was: Holy smokes, we’re losing money! We’re getting out,” said Claude Thau, who directs the annual Milliman Long-Term Care Insurance Survey. As the losses mounted and premiums spiked, consumers such as Haggett stopped buying policies. Moreover, Thau estimated, 1 in 6 applicants are unable to get coverage for health reasons.

Thus, fewer than 35,000 Americans bought stand-alone policies in 2024, compared with about 235,000 in 2010, according to a , a trade association. The average 60-year-old purchaser would, at age 80, receive a projected maximum benefit of $369 a day, Milliman reported. But the average annual premium on new stand-alone policies in 2024 — $3,265 — can seem daunting to someone close to retirement.

As the purchase of stand-alone policies has dropped, insurance companies have turned to policies bundling some long-term care benefits with life insurance or annuities. Those sales figures are climbing. Still, the association notes, only 3% of Americans age 50 or older have any long-term care insurance.

‘A Five-Alarm Fire’

That has prompted a recent spate of proposals to find public ways to protect Americans from ruinous costs that can continue for years. “This is a five-alarm fire,” said sent in May by U.S. Sen. Ron Wyden of Oregon and 16 fellow Senate Democrats to their colleagues.

The letter, more a statement of purpose than a specific legislative plan, proposed a “home care guarantee” for Medicare beneficiaries, among other efforts. Proponents expect to issue a more detailed report in the fall and to introduce a bill early next year.

A also proposed providing subsidized long-term care at home through Medicare, with beneficiaries making contributions according to their ability to pay. Like most of these programs, it would kick in when people need help with activities related to daily living or require supervision because of cognitive decline. The authors estimate that 8.2 million Americans will be eligible, far more than those who qualify for home-based care under Medicaid.

In the House, Rep. Tom Suozzi, a Democrat from New York, and Rep. John Moolenaar, a Republican from Michigan, have to create a catastrophic-insurance program for older people with disabilities. It would require them to pay for care out-of-pocket or with private insurance for the first several years before they would receive a monthly federal benefit.

Enacting federal initiatives in the current political climate seems unlikely, proponents acknowledge. The Trump administration’s plan to cut billions of dollars from Medicaid “has moved the needle backward on the accessibility of long-term care,” said Taylor Harvey, a spokesperson for the Senate Finance Committee.

So “are looking at what Washington is doing with a lot of interest,” said Norma Coe, who is an economist at the University of Pennsylvania and is tracking long-term care programs. Legislators have introduced bills in Illinois, Hawai‘i, and West Virginia; other states have task forces studying the issue.

“Long-term care is one of those conversations around every dinner table,” said Bea Rector, assistant secretary for the Department of Social and Health Services’ Home and Community Living Administration.

“Families step in,” she explained. Sometimes they can continue providing care, “but sometimes more formal care has to be put in place. That’s when people see the value of programs like this.”

Steven Russakoff knows the challenges of elder care, having provided years of support for his father, who died two years ago, and for his mother, who is now living in a nursing facility. “It’s brutal, it’s exhausting, and it’s extraordinarily expensive,” he said. The family has liquidated virtually all his parents’ assets to pay for their care.

Russakoff, who is 56 and lives in Shoreline, Washington, initially disliked WA Cares. He could handle the additional deductions (about $250 a year) from his paycheck as a director of university dining services, but he felt forced into a program he couldn’t use if he left the state to retire.

But WA Cares has already been amended several times and for many participants who move away, making him a convert. “It’s a good idea,” Russakoff concluded. “A necessary evil.”

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It’s a heightened concern for the estimated who are U.S. citizens or legal permanent residents, as new work requirements kick in for the federal-state healthcare program that serves low-income and disabled Americans.

Starting next year in most states, many adults enrolled in Medicaid will have to prove they work, are enrolled in college or vocational courses, volunteer, or do unpaid work for at least .

Advocates say this could pose a significant challenge to Medicaid-eligible farmworkers, who frequently work more than 80 hours a month during harvest season but less in other months. What’s more, outside the harvest season, many workers take on informal jobs in construction, landscaping, or home repair for which they don’t receive formal paychecks that would prove their continuing Medicaid eligibility. Still, they can establish eligibility if they prove their average monthly income over six months is equivalent to at least 80 hours of work at the federal minimum wage.

“Having a work requirement — having to create more paperwork and more proof — is certainly extremely challenging for farmworkers and others who are low-income and who may especially have seasonal jobs, not year-round, and do have periods” when there is no work available, said Alexis Guild, vice president of strategy and programs at .

New Requirements, Additional Hurdles

Agriculture is a , and Americans to put food on their tables. Nearly 60% of those workers are U.S. citizens or green-card holders, according to the . The remaining 40% lack legal status or are otherwise ineligible for Medicaid.

Even among farmworkers with citizenship or legal status, the uninsured rate is three times that of the general population, and most farmworkers with insurance are Medicaid beneficiaries, although participation rates vary by state. According to a , 71%-79% of eligible farmworker households report participation in Medicaid.

The new Medicaid work requirements were a key provision of the One Big Beautiful Bill Act signed last July by President Donald Trump. Under the federal law, and the District of Columbia must implement the requirements by Jan. 1. A few states have the work rule early.

The 80-hour rule applies in states that expanded Medicaid, a process that began in 2014 and was tied to the Affordable Care Act. Following the initial expansions, agricultural workers with legal documentation became to have health insurance, according to a 2021 article in the American Journal of Agricultural Economics.

Immigration Anxieties

The work requirements are the latest in a long list of obstacles placed between workers and the healthcare they’re legally entitled to, Guild said. “Medicaid certainly helps because it alleviates the cost issue,” she said. “But there are still other barriers, such as transportation, taking sick leave, and finding time to visit a health center. All these factors can prevent them from actually receiving medical care.”

For farmworkers with green cards and naturalized U.S. citizens, there is another source of stress: the fear that signing up for Medicaid could put personal information in the hands of immigration authorities.

That’s what worries Luis, a 45-year-old green-card holder and Medicaid recipient who dreams of becoming a U.S. citizen. Luis — who asked to be identified by only his middle name — lives with his wife and daughter in North Carolina, where he has worked in agriculture for nearly a decade.

Speaking in Spanish, he said that when he learned about the work requirements, he knew it would be challenging for him to prove that he works 80 hours a month. “I only work on farms for six or seven months; the rest of the year I work in whatever I can find,” he said.

Republicans in Congress argue that work requirements will reduce federal healthcare spending, encourage nondisabled adults to , and preserve safety net resources for the most vulnerable populations.

Among Hispanic adults enrolled in Medicaid, 67% are already working, according to a 2025 .

The Centers for Medicare & Medicaid Services did not respond to requests for comment for this article. But in June, when its “nationwide framework” to implement the Medicaid work requirements, Administrator Mehmet Oz said it would help beneficiaries “build skills and independence through work, education, job training, or community service, creating new opportunities for themselves and their families.” Federal officials say the new requirements “could reduce poverty by as much as 2.9 million people.”

Chronic Illness

Agricultural work is one of the nation’s , and it is associated with and , including respiratory conditions. A found that 37% of male farmworkers and 47% of female farmworkers in the state had at least one chronic health condition. The new work requirements present one more barrier for those seeking care, advocates said.

“People skip checkups and screenings, and conditions that could be caught early and treated cost-effectively” aren’t, said Adriana Cadena, executive director of .

Emergency rooms often become the “natural” place to go for healthcare, Cadena added. “This drives up waiting times and costs for all of us. … And when people are sick enough that they miss work, it starts a vicious cycle of lost productivity and family economic instability that again threatens all of us.”

A Loss for Families and Children

The new federal rules also require beneficiaries to verify their eligibility at least twice a year, twice as often as previously, creating another potential obstacle.

“Letters can easily be missed, and forms may go unfilled. If people get caught up in the paperwork, they could lose coverage,” said , an assistant vice president at , a nonprofit that promotes an equitable healthcare system.

For farmworkers who travel from state to state, the process can be especially difficult.

“You have to find the time to transfer your coverage and probably find a person or organization that can help you — and that can be really hard when you’re constantly moving,” Cadena said.

The situation highlights the difficulties of navigating a complex system for individuals and families already struggling to make ends meet.

“The result,” Cadena said, “could be the loss of coverage not only for workers, but also for their families and children.”

This article first appeared on 51ÊÓƵ Health News and is republished here under a .