The Trump administration has hinged federal funding for states on whether they end or loosen powerful but controversial laws that regulate the construction of new hospitals — with a handful of states poised to comply.

A chunk of the $50 billion available to states through the five-year Rural Health Transformation Program is partly contingent on policy commitments. The administration told states it would score their applications higher if they walked back their certificate of need, or CON, laws, which give a state approval authority over the expansion or construction of any healthcare facility. Six states indicated plans to revisit their laws in their applications.

Certificate of need laws, which require that a healthcare provider prove a community need for a new service, were intended to curb monopolies and rising costs. But critics of the laws say they’ve instead raised healthcare prices, stalled needed facilities, and barred rural patients from new technology. More than 30 states, plus Washington, D.C., enforce some sort of certificate of need law, according to the National Conference of State Legislatures.

Legislators in several states have been pushing to end the laws, which have faced scrutiny for decades — under Republican and Democratic administrations. But the Trump administration’s aggressive approach to tie the policies to funding has forced states to reckon with their laws quickly.

The Rural Health Transformation Program was added to President Donald Trump’s signature One Big Beautiful Bill Act as an initiative to modernize healthcare in remote areas. The Centers for Medicare & Medicaid Services, in its notice to states applying to the program, called certificate of need laws “an additional expense and burden on rural facilities” and explained how states with fewer certificate of need rules would get higher scores.

“It’s not the first time the federal government used funding as a state carrot (versus using a stick) to encourage alignment on an administration’s policy goal,” Maureen Hensley-Quinn, a researcher at the National Academy for State Health Policy, said in an email. She noted that President Barack Obama’s administration included millions of dollars in performance bonuses for states that made it easier for children to enroll in federally funded health insurance.

Hensley-Quinn said the funding “carrot” was an opportunity to take a hard look at whether policies like certificates of need were truly worth it.

“States need to carefully weigh the trade-offs of supporting a ‘voluntary’ federal policy no matter what,” she said, “and additional federal financing, especially in tight state budget years, can tip the scale.”

Obama, Trump on Same Page

Since the Rural Health Transformation Program became law last year, Tennessee has taken the most concrete action. In a bipartisan vote in April, state lawmakers passed a bill that will unravel most of its remaining certificate of need rules over the next four years. Alaska, Connecticut, Delaware, Iowa, and Mississippi have also said they would consider ending or loosening their laws.

“If there’s an issue where you can have President Obama and President Trump in agreement on something, that tells you the idea probably has some merit,” Wes Climer, a Republican state senator in South Carolina, said in 2021, supporting the repeal of that state’s certificate of need law. The legislature voted in 2023 to end most rules in the law, and in January it will stop requiring certificate of need applications for new hospital construction or expansion, leaving them only for nursing homes.

Some certificate of need laws require approval for changes as minor as a new piece of expensive equipment. In North Carolina, a hospital that won a certificate of need to build a much-needed facility was mired in a court battle for three years before breaking ground in 2026.

Hospital construction underway in Weaverville, North Carolina, in October. The project had been delayed three years, tied up in the state’s certificate of need process. (Andrew Jones/KFF Health News)

As more states consider removing their certificate of need laws, Hensley-Quinn warns of unintended consequences: Fewer records will exist that help states track hospital ownership.

Hensley-Quinn said frustrated state officials have come to her years after their states repealed certificate of need laws, saying that even with a licensure process, they don’t have insight into the financial state of their health systems or facilities, or how they’re managed. Certificate of need laws force companies seeking a new foothold in the state to submit voluminous applications. Once the laws are gone, few regulations force transparency. That leaves states unaware when a health system contracts with private equity to provide hospital services, for example.

“Without CON, without ownership reporting, and without an entity that monitors transactions or providers in that way, there’s no way for you to know,” Hensley-Quinn said.

Tennessee’s Certificate of Need Law

Tennessee lawmakers had pushed to change the state’s certificate of need law for years but didn’t pass sweeping legislation until it faced losing out on federal funding. Like all states, Tennessee is set to receive an equal share of half of the Rural Health Transformation Program’s grants, while the other $25 billion in funding is contingent on other factors, including states’ policy commitments.

In 2024, the state’s hospital association opposed a repeal effort in a letter penned by 12 hospital and health system leaders, many serving rural areas, though that more limited legislation passed anyway.

A repeal would harm vulnerable patients by driving up costs and thinning existing hospital staff, said Martin Chaney, CEO of Maury Regional Health, a system in rural Middle Tennessee south of Nashville. Ending the law would create rural healthcare deserts, Chaney wrote in the letter, because hospitals would choose to expand in areas that were already the most profitable, where residents had a range of health insurance providers.

“The premise that eliminating CON regulations will expand health care opportunities by increasing competition is not true for ALL Tennesseans,” Chaney wrote. “Instead, it would result in cherry-picking and increasing the gap in access to medical care in rural areas.”

A month later, TriStar Health — owned by the largest hospital company in the U.S., for-profit HCA Healthcare — applied for a certificate of need to build a hospital just 20 minutes north of Maury Regional Medical Center. Nashville-based HCA received approval despite brief opposition from Maury Regional Health, the system led by Chaney.

HCA did not respond to requests for comment.

Local leaders are divided on what the new hospital would do to healthcare in the region. “Competition is good,” Maury County Commissioner Kevin Markham told KFF Health News. Markham, like many in favor of the new hospital, said that patients should have options when it comes to choosing where they get hospital care.

But leaders of smaller hospital systems in Tennessee are worried. Judy Herbert, a Williamson County commissioner and board member at Williamson Health, another health system in the area, said ending certificate of need laws will prompt hospital closures. Big hospital systems will become the default for expensive procedures and dominate rural markets, while smaller hospitals that provided those procedures before will lose so much money, they’ll be forced to shutter or sell, Herbert reasoned, echoing the concerns of other advocates of the laws.

“Many challenges have emerged that place increasing pressure on healthcare organizations, especially independent nonprofits like Williamson Health,” that health system’s leadership said in an open letter in July 2025, citing Tennessee’s intentions around certificates of need.

In July of this year, Williamson Health’s board voted to sell its network of clinics, diagnostic centers, and a more than 330-bed hospital in a $900 million deal with Ascension St. Thomas, part of one of the largest healthcare systems in the nation.

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

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Four years ago, Oregon hospitals were under fire from state authorities and patient advocates. Hospitals, critics said, had made it too hard for patients to apply for and receive help paying their bills.

Within months, the state enacted a sweeping law that required hospitals to proactively screen patients and give financial aid to those who qualify for it. Oregon’s new rules, which took effect in July 2024, required hospitals to skip applications for nearly all patients — a rarity among hospitals nationwide.

“They will be told up front, Hey, we got you,” said Democratic Oregon state Sen. Lisa Reynolds, who introduced the legislation. “You are here at a very scary time in your life because of illness or injury, and we got your back.”

The law worked.

Oregon Health & Science University’s hospital, one of the largest in the state, saw 64% of its patients automatically qualify for financial assistance in the early months of the new law, up from 12% previously.

In their first full fiscal year under the law, spending by Oregon hospitals on financial assistance more than doubled, on average, according to federal financial reports from about two-thirds of the state’s hospitals. That’s compared with their last full year before the change.

For patients, the switch meant direct relief from high healthcare costs, advocates said.

“They don’t have to have the late nights being like, how am I going to afford my mortgage? How am I going to afford these medical bills?” said Adam Zarrin, a director of state government affairs for the advocacy group Blood Cancer United.

Hospitals in the state have pushed back on the requirements, saying they need better screening tools, and they face added financial strain from the Trump administration’s domestic policy agenda. Millions of people are projected to lose health insurance in coming years under cuts to Medicaid pushed through by Republicans in Congress.

Oregon’s early success is the first big test of a new approach that more states are turning to, known as presumptive eligibility. Hospitals skip the applications and screen patients automatically to determine if they qualify for aid.

North Carolina this year expanded its screening requirement to include patients with income up to triple the poverty line. California and Delaware are requiring hospitals to automatically grant financial aid by July 2027.

A Promising Tool To Prevent Medical Debt

As many as 100 million adults in the U.S. have healthcare debt, according to a KFF Health News analysis. That financial burden can alter people’s lives, forcing them to skip prescriptions and follow-up care to avoid further bills.

Hospitals are a major source of that debt, and they have faced growing scrutiny over their prices and billing practices.

Policymakers have focused specifically on nonprofit hospitals, which account for about half the sector. Nonprofit hospitals typically don’t pay taxes, in exchange for providing benefits to their communities — a vaguely defined standard under federal law. Many hospitals meet this requirement by providing free or discounted care to low-income patients.

That financial assistance, however, can be difficult to get. Applications can be onerous and confusing. Congress and state officials have spent years testing policies to promote the help and make it easier to receive, with mixed results.

Research finds hospital financial aid spending varies, as does the degree to which hospitals benefit by not paying property, sales, or income taxes.

“Hospitals have been on the winning side of this deal for a long time,” said Reynolds, the Oregon lawmaker. “They enjoy millions and millions and millions of dollars in tax breaks, and that money is supposed to be then spent on poor people who can’t afford their care or even their copayments. It has not penciled out.”

Reynolds pressed for Oregon’s screening requirement, she said, to hold hospitals “accountable for what they should have been doing all along.”

Lisa Reynolds, a pediatrician and Oregon state senator, pushed legislation to require Oregon hospitals to proactively screen nearly all patients for financial aid and provide it to those who are eligible. The law has led to a significant increase in the number of patients receiving assistance. (Kristina Barker for KFF Health News and Tradeoffs)

Early evidence suggests the law is doing what Reynolds hoped. Oregon hospitals’ spending on free and discounted care increased to 2.7% of all operating expenses, on average, from 1.4%, among the roughly two-thirds of hospitals with available federal data.

That brings hospitals in Oregon closer to the national average for nonprofit hospitals, which from 2021 to 2024 was about 2.4%, according to an analysis by Johns Hopkins University researcher Hossein Zare, who studies the industry.

More Help for the Insured

Among those in Oregon who started to get more help: patients with health insurance.

OHSU’s spending on help for insured patients reached about $39 million in the first year under the law, federal data shows, about five times as much as in previous years.

Lawrence Furnstahl, then OHSU’s chief financial officer, said in a public meeting in January 2025 that, before the law, insured patients often didn’t apply for help and instead paid their share of the bills. The new automatic screening often wiped out or reduced what they owed — including for large deductibles that patients have to meet out-of-pocket before insurance will kick in.

Patients who pay hospital bills often still carry medical debt, surveys show, because many use credit cards or loans from family, friends, or banks to afford their care.

A 2025 survey from the Commonwealth Fund found that 1 in 3 adults with private insurance have medical debt.

“It defies the purpose of health insurance coverage, which is to enable people to get healthcare when they need it and protect them from serious costs,” said Sara Collins, an economist and senior scholar with the Commonwealth Fund.

Oregon Health & Science University spent about $64 million on financial assistance in the first year of new state requirements to proactively screen patients for eligibility and award them help. “This is going to our patients,” said OHSU’s chief financial officer at the time, Lawrence Furnstahl, at a public meeting. “It is a good thing, but it is an expensive thing.” (Kristina Barker for KFF Health News and Tradeoffs)

‘A Very Different World’

For hospitals, the new requirements come as healthcare costs are climbing and federal support for the safety net is shrinking. Nationally, an estimated 14 million more people will be uninsured in 2034 as a result of President Donald Trump’s signature tax-and-domestic-spending law and the expiration of enhanced Obamacare subsidies that Republican lawmakers allowed to lapse at the end of last year.

Hospitals supported Oregon’s new presumptive eligibility law, said Sean Kolmer, an executive vice president for the Hospital Association of Oregon. But they’re feeling more financial pressure, with the organization expecting the state’s uninsured rate to climb to 10% or higher in coming years, he said, up from about 3% before Oregon’s screening law passed.

“That’s a very different world,” he said.

OHSU saw costs rise rapidly. “It is a good thing, but it is an expensive thing,” Furnstahl said in a public meeting as he gave an update on the first months under the law.

In the first year under the new law, OHSU spent about $64 million on free and discounted care — about 1% of what it spent on operations that year.

The true cost of more up-front screening is hard to quantify, medical debt experts said. It must also take into account how many people would have never paid their bills anyway and how much hospitals save by not chasing payments.

Lawmakers said hospitals pressed them for relief, and in April, Oregon enacted a new law to ease the state’s screening requirement.

The original law required hospitals to screen everyone on Medicaid or who was uninsured and anyone who owed $500 or more. Lawmakers raised the monetary screening threshold for a single visit to $1,500. The Medicaid or uninsured requirement remains.

Reynolds, who spearheaded the original law, was unsympathetic to hospitals’ cost concerns. But she agreed to the rollback because she wanted hospitals to have some relief as they fine-tuned their screening process. Oregon hospitals reported that their screening data was less accurate for patients with higher incomes, leading some people who didn’t qualify for help to receive financial assistance.

OHSU studied economic data for Oregon’s residents and reported that about 57% likely had incomes that qualified them for its financial assistance, slightly under the 64% of patients who were receiving help.

Hospitals’ warning of increasing financial stress was a motivator for Democratic Rep. Rob Nosse, who chairs the healthcare committee in the Oregon House of Representatives.

“I don’t want any suburban or rural hospitals to close on my watch,” Nosse said.

People who are no longer automatically eligible can still apply for help with bills less than $1,500, he said.

“I’ve got to make it more expensive for someone to get healthcare so that the hospitals can stay in business,” he added. “What a country.”

This article is part of “Hidden Help,” an investigative series from Tradeoffs and KFF Health News about how hospitals can protect their patients from the life-altering harms of medical debt.

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

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

LAVONIA, Ga. — It had been a decade since Kara Holden last had a baby. But as the former obstetric nurse prepared for her fourth child, her head was swimming with contingency plans.

The labor and delivery unit where she used to work in this rural northeastern Georgia community is no longer open. So, she asked former co-workers to be on standby around her anticipated due date. She and her midwife mapped out emergency rooms along the more-than-50-mile trek to the hospital in Greenville, South Carolina, where she planned to give birth. And, to prepare for a worst-case scenario, she curated items to keep in the car in case she went into labor en route.

“That’s a horrible place to put a pregnant woman in,” said Holden, who on Oct. 11 made the painful, hourlong trip to Greenville Memorial Hospital to deliver her son Tucker.

Holden lives roughly midway between Athens and Greenville, two of the nearest cities with labor and delivery units. Owing partly to Medicaid cuts from President Donald Trump’s One Big Beautiful Bill Act, St. Mary’s Sacred Heart Hospital in Lavonia stopped providing obstetric services nearly a year ago. Its closure is part of a trend touching rural communities nationwide. From South Dakota to Alabama and from Ohio to California, low Medicaid reimbursement and dwindling birth rates are pushing hospitals to shutter these services. Today, fewer than half of rural hospitals offer labor and delivery services.

Kara Holden welcomed her fourth child, Tucker, on Oct. 11. Holden lives roughly midway between Athens, Georgia, and Greenville, South Carolina, two of the nearest cities with labor and delivery units. She traveled more than 50 miles to Greenville Memorial Hospital to give birth. (Kara Holden)

In Georgia, only 36% of rural hospitals have a labor and delivery unit, and four have closed since 2020, according to data from the Center for Healthcare Quality and Payment Reform.

To address the challenge the closings pose to patients seeking care, the state — which ranks among the worst in the nation for maternal health outcomes — has turned to federal money from the $50 billion Rural Health Transformation Program. This fund was created by congressional Republicans to offset concerns about the outsize fallout Trump’s signature legislation would have in rural communities.

More than $12 million — out of the nearly $219 million approved for Georgia in the program’s first year — will be allocated toward placing obstetric carts in 43 rural hospitals without labor and delivery units. The carts will be outfitted with supplies needed for a birth or obstetric emergency. For example, they’ll have neonatal resuscitation tools, thermal blankets, and essential medications such as oxytocin, which stimulates contractions, and magnesium sulfate, used to treat seizures in pregnant people with high blood pressure.

The delivery carts sound fine, in theory, said Justin Peterson, an OB-GYN who practices in southern Georgia and has seen the pressures rural health institutions face providing maternal care.

Like Holden, Peterson worries that the carts, while helpful, will put supplies in the hands of ER doctors lacking extensive obstetric experience. Instead, he wants the state to fill coverage gaps by investing more to prevent the closure of labor and delivery units in rural areas.

“You’re putting a band-aid on a hemorrhage,” he said.

St. Mary’s Sacred Heart Hospital in Lavonia, Georgia, stopped providing labor and delivery services in October 2025. Hospital leadership cited Medicaid cuts in the One Big Beautiful Bill Act as the final straw. (Briah Lumpkins/KFF Health News)

‘Can’t Practice Scared’

Brittany Mitchell was about seven months pregnant when Sacred Heart’s labor and delivery unit closed. She was reassigned to an OB-GYN in Athens, even though the nearly 50-mile drive from Lavonia was stressful and inconvenient.

That OB-GYN wanted to see Mitchell weekly after finding high levels of protein in her urine — a warning sign of preeclampsia, which can cause organ damage, seizures, and other complications. To make it to those prenatal appointments, she routinely gave up a day of work as a home health aide, a job she said already didn’t pay much.

But if Mitchell were to have another baby, she said, she’d still prefer to drive to Athens to see an OB-GYN than be treated by an ER doctor. When she had her first child nine years ago, the local OB-GYN had to act quickly when her daughter briefly lost oxygen.

“If they were in that situation,” she wondered of ER doctors, “would they know how to do all that?”

In written responses to KFF Health News, Lauren Williams, director of communications for the Georgia Department of Community Health, said that training ER medical staff is the main goal of the obstetric cart initiative. The rollout will include simulation drills, during which ER staff will practice high-risk procedures.

The Georgia Hospital Association will procure and distribute the carts. When exactly that will happen is unknown, but the grant funding must be spent by Sept. 30, 2027, said Anna Adams, the organization’s chief government relations officer.

The concept of obstetric carts is great, said Justin Law, an emergency doctor with SouthlandMD, a physician-owned and -operated healthcare management and staffing company. Most items planned for the carts are already available in ERs. But having them in one organized spot will be helpful, he said.

Still, while ER doctors are more frequently positioned at the front lines as labor and delivery closures persist, advocates argue that they shouldn’t be used as a stopgap in obstetric care.

In the decade he’s worked across rural Georgia, Law said, he’s never delivered a baby in the ER even though he’s trained in emergency obstetrics and has experience delivering babies as a paramedic. When a mother needs an emergency cesarean section or has another high-risk complication, she would likely be transferred to a hospital with labor and delivery capabilities, Law said.

Holden, the former obstetric nurse, said familiarity with obstetric delivery practices and procedures is essential because some complications can’t wait for a transfer. “You’re not going to save anybody’s life just because you got access to some equipment,” she said.

Adams understands the concerns and acknowledged that the ER is not the ideal location for delivering a baby. “But sometimes things happen that are outside of our control,” she said. “And when it does, we want to make sure those hospitals are prepared.”

Robin Clyatt, maternal health community outreach coordinator for Hope for Georgia Moms, said ER doctors have vast knowledge. But they might see someone with a major maternal health complication, such as a hemorrhage, only a few times a year, and therefore may lack the skills to act immediately, she said.

“You can’t practice scared when it comes to obstetrics,” Clyatt said. “And that’s important, because when you practice scared, you do stupid things.”

When Holden was pregnant with her other children, the OB-GYN was only a five-minute drive away. But after the local hospital cut its labor and delivery service, she took extra precautions to ensure she was logistically prepared for the arrival of “baby Tucker.” (Briah Lumpkins/KFF Health News) Holden adorned a nursery with vintage trinkets and family heirlooms in anticipation of the arrival of Tucker. (Briah Lumpkins/KFF Health News)

Ways To Keep Access

The labor and delivery unit at the Coffee Regional Medical Center in Douglas serves six counties in southern Georgia. The number of live births there increased from 551 in 2020 to nearly 1,000 in 2024, which shows the impact when nearby facilities close, said Peterson, who practices at the Coffee Regional Hospital Women’s Center.

While he understands that hospitals must consider their bottom lines, business decisions in recent years have often taken precedence over patient care, he said.

“They just say, ‘Oh, you know, the numbers aren’t there. We’re closing,’” he said, adding that when rural labor and delivery units shutter, the chance they’ll reopen is small.

Mark Ralston, public relations manager for St. Mary’s Health Care System, which owns Sacred Heart, did not respond to multiple requests to further discuss the unit’s closure. But in its announcement, the system said the decision followed “an extensive 18-month discernment process that included intensive efforts to recruit additional physicians, create new partnerships, and pursue incremental funding sources.”

Nationwide, states are attempting to narrow gaps in maternal healthcare using federal funds. South Dakota will establish maternal health hubs to determine where resources are needed and help mothers navigate the health system. Ohio is establishing birth centers in rural communities.

In its proposal for federal rural transformation money, Georgia included incentives such as funding 75 new residency slots in various specialties and creating a grant program that would reimburse physicians up to $250,000 in relocation fees if they chose to practice in rural areas.

State legislators could incentivize doctors to stay in rural areas, offer higher reimbursement rates for hospitals, and provide loan forgiveness for physicians, Peterson said. Communities should also look to incorporate certified midwives and community health workers, Holden and Clyatt said, though state law makes it difficult for both groups to practice. Currently, certified nurse midwives are allowed to practice only in partnership with a physician, which maternal health advocates argue creates a steep financial burden.

Holden had the ability to send her vitals to her doctor and meet with them virtually for prenatal care.

As she adorned bookshelves in baby Tucker’s cozy, sage-green nursery with vintage trinkets and family heirlooms, she said she thought of less-resourced mothers in the area, who may be on Medicaid or not have the luxury to travel an hour for a prenatal appointment.

Holden worries that without prenatal care, conditions like preeclampsia could go undiagnosed more often. “They don’t make it, and their baby doesn’t make it, because they never got that diagnosed and managed,” she said.

People like to remain optimistic that everything will go as planned, but “there are so many things that can go wrong,” she said. “And they can go wrong really quick.”

Lavonia is a small city near the Georgia-South Carolina border. The local St. Mary’s Sacred Heart Hospital stopped providing obstetric services in October 2025, citing Medicaid cuts. Two of the nearest cities with labor and delivery units are each about an hour away. (Briah Lumpkins/KFF Health News) KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

A group of Democratic senators is demanding that the federal agency overseeing Medicaid — the health coverage program for people with low incomes or disabilities — institute tougher standards for government contractors running complex computer systems that millions of people rely on to get benefits.

Three Democratic senators issued recommendations a year after launching an inquiry into companies — Deloitte, General Dynamics Information Technology, Gainwell Technologies, and Conduent — that are paid billions in taxpayer dollars to build or run eligibility systems for safety net health coverage. Those benefits, provided to the poorest Americans, can mean the difference between having medical care or going without.

A handful of states directly operate their Medicaid eligibility systems, but most rely on contractors to build and run them. KFF Health News found that Deloitte dominates this slice of government business. Deloitte-run systems have been plagued by errors that can result in eligible people losing their health coverage, previous KFF Health News investigations have shown. Malfunctions can cost millions of taxpayer dollars and take years to fix.

“Administrative errors in this line of work are not like errors in other fields,” the senators wrote in a new report. “There are life-and-death consequences for sick Americans who seek care only to find that their Medicaid coverage has been terminated.”

President Donald Trump’s signature tax and domestic policy law has mandated Medicaid changes that are forcing states to adapt their computer systems on a compressed timeline. Medicaid policies under the One Big Beautiful Bill Act add red tape and restrictions that make it harder for people to stay enrolled.

Those include the first federally mandated work requirements in Medicaid’s history. Next year, to keep benefits, millions of adult Medicaid enrollees in more than 40 states must prove they’re working or doing a similar activity for at least 80 hours a month, unless they qualify for an exemption.

Democratic senators Ron Wyden of Oregon, Elizabeth Warren of Massachusetts, and Raphael Warnock of Georgia say the new restrictions — layered atop computer systems with histories of problems — will result in large numbers of people improperly losing health coverage.

State eligibility systems “have been built up, patched, and frankensteined for decades,” the senators said.

The senators sit on the powerful Senate Finance Committee, which oversees government health programs such as Medicare and Medicaid. Many of their recommendations target the Centers for Medicare & Medicaid Services. Their ideas face long odds at the moment. Republicans control executive branch agencies, and any potential legislation would need to advance in a Republican-controlled Congress.

That balance of power could shift if Democrats win a majority of Senate seats in November’s midterm elections. The three lawmakers called on CMS to establish mandatory standards in state contracts with companies so states can receive federal funds.

These companies sign contracts with state governments, but the federal government approves them and pays the bulk of the cost. The federal government covers 90% of state costs to develop and implement state Medicaid eligibility systems and 75% of ongoing maintenance and operations expenses, according to federal regulations.

The lawmakers also said CMS should publicize the contracts and contract amendments. Currently, those documents can be obtained from state governments, but accessibility varies significantly.

The senators also said CMS should publicly disclose companies’ performance data and change orders. Change orders are used to adjust computer systems, and states set aside millions of dollars for them. But systems may require fixes beyond the agreed-upon work.

“The millions of Medicaid enrollees who will be required to prove their eligibility every six months, to document every hour of work on a glitchy portal, to find a doctor willing to certify that their cancer or their chronic condition is bad enough to qualify for an exemption — deserve contractors who are accountable for what happens when the system fails them,” they wrote.

In October 2025, the three Democratic senators, as well as Sen. Bernie Sanders (I-Vt.), sent letters to several companies that CMS identified as eligibility system contractors. At the time, they wrote that it is each company’s responsibility to build functioning eligibility systems, “rather than to prioritize their bottom line.”

As of June, 66 million people were enrolled in Medicaid, according to CMS.

The lawmakers had asked the companies about their contracts, lobbying expenditures, and protocols for making changes in light of system errors, among other issues. The companies provided the lawmakers with some details but often did not answer their questions.

The companies said states are responsible for making the final call on whether a person receives benefits. State workers approve or deny eligibility, Deloitte said in its response letter, “not a private contractor or an automated system acting alone.”

The companies did not provide the senators with specific details about documents or processes they use to help states make eligibility determinations.

The companies also denied they have any financial incentives to remove people from Medicaid. Conduent said it gets paid less if enrollment drops.

The companies did not say whether states are on the hook for paying to fix the companies’ errors.

Deloitte, Gainwell, GDIT, and Conduent said it’s common for states to require that they meet certain performance metrics.

Gainwell told lawmakers, “We take seriously the issues raised.” GDIT said it would answer additional questions from lawmakers.

Deloitte said in its response to the lawmakers: “We are proud of our work serving individuals and families across the U.S.”

CMS did not respond to a request for comment.

CMS takes steps to check whether Medicaid eligibility systems are working properly. As part of the process for certifying states’ systems, federal officials check certain metrics. They include whether states are correctly calculating people’s incomes, whether individuals are given timely eligibility decisions, and whether eligibility categories are accurate. However, it is rare for the federal government to withdraw federal money from states for falling short.

In August, CMS announced it intends to develop standards for Medicaid systems. The ultimate goal is to improve enrollees’ access to care and their experiences with these systems, CMS said. The agency also has said the standards will hold companies accountable to deliver systems that are “continuously improving” and have a “stronger capacity to implement critical policy changes.”

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

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Until recently, a Manhattanite might venture no more than a few dozen blocks to find the world’s most sophisticated cancer treatment. Cutting-edge American medicines have helped reduce the U.S. cancer death rate by about a third since 1990, and New York City hospitals deliver some of the best care in the country.

But in January 2025, the city’s health systems had no good options for Debbie Doppelt, a 60-year-old jeweler with an unusual form of lung cancer that mostly afflicts nonsmokers like her. The Food and Drug Administration hadn’t yet approved sunvozertinib, a drug developed in China that targets the mutation driving Doppelt’s tumors. She had been through chemotherapy and surgery, but the cancer had now spread to her brain. And she didn’t qualify for the relevant clinical trials.

Then an option emerged, in an offhand remark.

“Too bad she’s not Chinese,” a doctor told her son Max Doppelt, who had organized his mother’s care since her 2023 diagnosis. “She could go to a pharmacy in China and buy it.”

Within hours, mother and son had reached out to friends and relatives, one of whom procured a small supply of sunvozertinib from a contact living in China. A few months later, Max flew to Shanghai to get a refill.

Other patients have followed. “No organization or doctor is guiding patients to China, but word gets out,” Max said. He said he knows of at least 30 Americans who’ve made the pilgrimage to obtain the drug, which the FDA licensed in July 2025 but wasn’t yet on the U.S. market as of mid-October of this year.

Max Doppelt has organized care for his mother, Debbie Doppelt, since her cancer diagnosis in 2023. (The Doppelt family)

Sunvozertinib, made by Shanghai-based Dizal Pharmaceutical, isn’t the only treatment drawing patients to China. Americans, Europeans, and others are trekking there to enter clinical trials for CAR-T therapy, an area in which China is now a world leader.

China, until recently known more as a supplier of drug precursor chemicals and generic medicines, has become a biotech powerhouse, accounting for as much as 46% of new drugs tested around the world in 2025. U.S. pharmaceutical companies are testing new therapies there and signing billion-dollar contracts with Chinese firms to develop and market their drugs.

China’s progress has alarmed some politicians, who warn of lost jobs and U.S. dependency on Chinese medicines. The Trump administration in June kicked off Operation TrialBlazer, aimed at speeding up some FDA regulatory processes to lure back more clinical trials.

China’s poor showing in vaccine and drug development during the covid pandemic prompted the country to overhaul its biotech sector, dramatically altering the global industry, said Sam Rasty, a veteran of small biotech companies who now leads one called FynderBio. Venture capital now flows heavily to early-stage clinical work in China and Australia, where regulatory systems enable key first-in-human studies much more quickly than in the United States.

Chinese companies are so much faster at this process that U.S. biotechs, which used to share early advances at conferences or funding meetings, now routinely conceal their progress out of fear that competitors will take their ideas and speed them to market, said Steve Potts, CEO of Breakthru Medicine, a small biotech.

At a meeting he attended in May, nearly all the 60 biotech CEOs in the room planned to run phase 1 trials in Australia, Europe, or China, Potts said. Five or 10 years ago, most of those trials would have been carried out in the U.S.

“Slow and prohibitive” FDA requirements are driving investment to more-nimble Chinese companies, President Donald Trump’s nominee to lead the agency, Heidi Overton, warned in her opening statement at her Sept. 24 confirmation hearing.

The movement of clinical trials overseas “should give pause to every American and those who serve on their behalf,” Overton said. “When we lose this advantage, we lose our health security. And when we lose our health security, we lose everything.”

Overton pledged to continue TrialBlazer, which mirrors Australian processes begun in 1991. It is aimed at accelerating clinical trials and approvals so patients do not feel compelled to seek treatment abroad, said Department of Health and Human Services spokesperson Emily Hilliard. It is sometimes legal to obtain medication abroad for personal use, but the FDA “cautions patients about potential safety and quality risks associated with treatments outside our regulatory system,” she added.

As the FDA moves to streamline drug development, members of Congress are trying to slow Chinese firms’ integration into U.S. biotech.

Rep. John Moolenaar (R-Mich.), who chairs the House Select Committee on the Chinese Communist Party, in June co-sponsored legislation with Rep. Debbie Dingell (D-Mich.) requiring all U.S. pharmaceutical deals with Chinese companies to be cleared by the Treasury Department.

Others see biotech protectionism as misguided. China’s focus on improved medicines can only help us, said Peter Kolchinsky, managing partner of RA Capital Management, which has Chinese investments in its biotech portfolio.

“We may be adversaries in many areas, but we’re not competing with them to cure cancer. We are collaborating with them to cure cancer,” he said. “There are things that are bigger enemies than any other nation on Earth.”

Cancer Knows No Boundaries

A minor but persistent cough led to the diagnosis of Debbie Doppelt’s cancer in late 2023. Chemo, immunotherapy, and surgery kept it at bay for months, but in December 2024, scans showed the cancer had spread to her brain, with 10 tiny tumors.

The FDA earlier that year had approved amivantamab, a drug that targeted the mutation driving Doppelt’s tumor, but Max was concerned about its toxicity. Also, several doctors he consulted told him that amivantamab might not penetrate brain tissue to fight cancer there.

Doppelt tried to enter a clinical trial at Memorial Sloan Kettering Cancer Center, where she was a patient, for zipalertinib, another drug that targeted her mutation. But in January 2025, the Doppelts learned that a slight scarring on her lungs had rendered her ineligible for the study.

That left sunvozertinib, which gained approval in China in 2023. It was also being tested in the U.S., but only in late-stage trials in which half the subjects received chemotherapy only. That risk was a nonstarter for Doppelt, whose cancer had already outsmarted chemo.

So Max flew to Shanghai, returning with 26 boxes of sunvozertinib in his luggage. The drugs cost about $10,000, he said.

“Getting on the plane and bringing the medicine home felt like my life’s purpose,” Max said. “The data was so clear that this drug had significant efficacy in the brain. Anything else she might do, she might not last a year.”

On Sept. 1 of this year, AstraZeneca signed an agreement with Dizal to distribute the drug worldwide, and it plans to make it available in the U.S. by the start of 2027, spokesperson Tara Parsell said.

Doppelt, who runs a diamond business with her husband, has tried to stay positive and healthy, scarcely missing a day of work since her 2023 diagnosis. She said she’s grateful she has a loving community and the means to afford the best available therapies.

“I think I’ve been pretty successful at having, actually, an amazing three years,” she said. “In some ways a better three years, with all of it, than the three years before, because you’re so appreciative of everything.”

Doppelt’s parents were Holocaust survivors. “They were always saying: ‘This piece of bread tastes so good! Do you know what it is to be hungry?’”

Searching for help for his mother gave Max, a 30-year-old computer engineer, an idea for helping patients find the right treatment — which, in cases of advanced cancers, may be a clinical trial.

A year ago, he quit his tech job and started a company that uses artificial intelligence to combine data from research and drug company sites with a patient’s health records to help them find the right study.

Similar apps are being used to help drug companies and hospital systems increase the percentage of U.S. cancer patients who enter clinical treatment trials, currently at about 7%. This will also strengthen the U.S. drug industry, said Paradigm Health CEO Kent Thoelke, whose company offers an AI program designed to help hospitals and clinics enroll trial subjects.

About 300 patients have used Max’s app. So far his clients, whom he doesn’t charge, have all been lung cancer patients like his mom. Sunvozertinib seems to help about half those who take it, he said.

A 70-year-old woman whom Max had assisted got a six-month supply of the drug earlier this year from China, only to learn after three months that it wasn’t working. “My cancer had spread,” said the woman, whom KFF Health News agreed not to name, to protect sensitive health information.

‘I’ll Do Everything in Our Power’

Doppelt has done well on the drug. Some 19 months after starting on it, her cancer was still mostly kept at bay, with the help of a few radiation treatments and dose adjustments.

AstraZeneca’s plans to widely distribute sunvozertinib would mean no more trips to China. But Max had few illusions that the drug would work for his mom forever.

“She has a metastasizing cancer that will learn to bypass the drug,” he said. “At that point we’ll be dependent on the latest and greatest therapies. If they happen to be in China, I’ll do everything in our power to go there.”

At his Upper East Side apartment one recent afternoon, Max examined the current clinical trial outlook for his mother. He pulled up her profile on the app and scrolled down a list scoring available trial sites according to their fit and proximity.

“This one looks good,” he said, pointing to a clinical trial for firmonertinib, a drug China approved in 2021 that’s under study in the U.S. and elsewhere.

CAR-T therapy is another possibility, particularly a variety that the University of Colorado has developed to boost patients’ immunological attack on mutations like the ones driving Doppelt’s cancer.

But Kyle Concannon, a leader of the Colorado research team, said regulatory uncertainty has slowed his progress. As new tools enable sophisticated measures of things like toxicity and tissue distribution, they add time, cost, and risk to the therapy’s development. These technologies may be better at detecting possible harms, “which is good,” Concannon said, “but the alternative to a new medicine, with a natural disease like lung cancer, is the individuals will die from their disease.”

Max Doppelt and other patient advocates, while pushing for faster FDA processes, don’t want to rule out more Chinese medicine runs.

“When drugs are approved in China but not in the U.S., of course we will deploy the China option where necessary,” said Marcia Horn, CEO of the nonprofit International Cancer Advocacy Network. “Lives depend on it.”

Max would prefer to see the drugs his mother needs developed in the United States. But he, too, opposes any effort to freeze out the Chinese biotech industry.

The discovery of new life-preserving drugs “really brings us together,” he said. “We’re all humans at the end of the day.”

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

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Letters to the Editor is a periodic feature. We welcome all comments and will publish a selection. We edit for length and clarity and require full names.

Not-So-Great Healthcare

Why doesn’t world-class medicine produce world-class health?

Hayat Norimine’s reporting gets at something that has bothered me for a long time about American healthcare (Priced Out: “As Health Insurance Costs Soar, Healthcare Workers Also Feel the Pinch,” Sept. 22).

We are very proud of U.S. medicine, and we should be. We are at the forefront of new treatments, our clinician workforce is unmatched, and we deploy technologies that seemed impossible just a few years ago. Yet we are in the middle of the pack compared with other countries, in terms of healthy lifespan and many markers of quality care.

At the same time, the cost of accessing care has become outrageously high. When clinicians stop getting health insurance for themselves and their families, you know something is deeply broken.

What good is our health system if most people cannot afford to use it?

One family in Norimine’s story went without insurance when their premiums climbed. Another person kept her coverage but waited weeks to see a doctor because of a $10,000 deductible. These are different problems, but both expose the distance between the care we can provide and the care people can actually access.

Insurance is supposed to help people get the care they need to stay healthy, not just when they are at death’s door. Yet the way insurance is designed can discourage someone from seeing a clinician early, filling a prescription, or following up before a problem gets worse. A clinician may say, “This is what you should do next,” while a person’s coverage gives them a reason to wait or decline.

That tension is not an accident. It is how the system was built. Doctors design care. Insurers design coverage. The two are put together in separate rooms by different teams, measured on different things, then handed to the same person as if they were one plan. No physician would design a $10,000 deductible; it just blocks people from investing in prevention and getting care early. But no physician was in the room when that threshold was set.

Making coverage affordable is essential. So is asking what that coverage enables people to do. If better health is the goal, the people responsible for a person’s health need a hand in shaping what their coverage pays for and when. Design coverage and care together, and it gets easier for people to get the care we know works while avoiding waste.

— Clay Johnston; Austin, Texas

On Dementia, Violence, and Sedation

Reading “Drugs Are Widely Used To Sedate Dementia Patients. Her Sons Wanted To Keep Her Off Them” (Sept. 30) inspired me to share my own experience.

My husband died of dementia about two years ago at age 86. It was not an easy journey. Dementia made him agitated for the same reason it does to others: People with dementia cannot tolerate being told “no.”

So when I had to tell him to stop driving, he became violent. I was told by an eldercare specialist that if my husband remained at home, he might kill me. So it was off to a memory care center, a really good and really expensive one. And he became violent and agitated there because he couldn’t come home, which was what he wanted, and which I could not safely handle. I was also aware that if he couldn’t make it at the memory care center, there was virtually no other place that would take him.

So did I say yes to medication? I did indeed. Even with the antipsychotic, my husband would become out of control. He often tried to “abscond,” as they say in memory-care speak. I also paid through the nose for one-on-one care, which kept him sort of safe. But one night, he fell in the bathroom and broke his hip. A hip replacement was suggested. He was suffering, he had absolutely no quality of life, and I turned the offer down. He was transferred to palliative care and died peacefully about five days later.

There is no solution to this problem that I can see other than medical aid in dying, which he probably would have refused. Me — I will not refuse. My current terror is that I might do this to my remaining family.

— Nora Staffanell; Monroe, New York

The issue is appropriate treatment, not simply drug avoidance.

Jordan Rau’s report rightly highlights the danger of using sedating medications simply to make people with dementia easier to manage. But inappropriate chemical restraint should not be confused with medically appropriate treatment of serious neuropsychiatric symptoms.

Psychosis, agitation, and aggression are distinct. Before prescribing medication, clinicians should identify the target symptom and look for reversible contributors such as pain, infection, medication effects, constipation, sleep disruption, sensory impairment, fear, environmental overstimulation, or the way personal care is being delivered.

Nonpharmacological, person-centered interventions should generally come first. The American Psychiatric Association recommends antipsychotics, outside of emergencies, only when agitation or psychosis is severe, dangerous, or causes substantial distress and after nonpharmacologic approaches have been assessed. When used, treatment should begin at a low dose and aim for the minimum effective dose.

However, nonpharmacological measures do not always suffice. In 2026, the APA reaffirmed that antipsychotics can benefit some older adults with behavioral and psychological symptoms of dementia when used judiciously within a comprehensive treatment plan. Brexpiprazole, for example, received FDA approval in 2023 for agitation associated with Alzheimer’s dementia.

These drugs carry real risks, including increased mortality, sedation, orthostasis, extrapyramidal symptoms, cerebrovascular events, and falls. But untreated severe agitation or aggression also carries risks: distress, injury, emergency transfers, hospitalization, caregiver breakdown, and loss of placement.

The responsible question is therefore not whether antipsychotics are dangerous, but whether, for a particular patient and target symptom, likely benefits outweigh risks after reversible causes and nonpharmacological measures have been addressed.

Good dementia care means neither reflexive prescribing nor reflexive withholding. It means careful diagnosis, person-centered care, informed risk-benefit discussion, lowest effective dosing, close monitoring, and periodic attempts to reduce or discontinue medication when appropriate.

— James Ellison; Philadelphia

Decoding ER Bills

Autumn Daniels was billed $410 for an emergency room visit in which no clinician evaluated her (Bill of the Month: “She Left After Waiting Hours in the Emergency Room. The ER Billed Her Anyway,” Sept. 29). She received registration, vital signs, and a single question, then sat in the waiting room for four hours and left.

Carle Health billed CPT code 99281, an evaluation and management service. The American Medical Association’s CPT guidelines, quoted in your article, state that triage alone is not an evaluation and management service and cannot be reported with that code. Carle’s own email confirms the problem by defining “care” to include registration and nursing assessment. That’s triage under another name.

Billing for a service that was not performed is the most important reason insurers deny hospital claims, and it’s what physicians are trained to recognize as fraud. Daniels’ insurer denied the claim under “against medical advice,” a label that cannot apply to a patient no clinician ever saw. The right response is a written refusal to pay, addressed to the hospital, stating that the billed service was never rendered.

I spent 20 years in clinical medicine and over a decade as a health insurance medical director reviewing exactly this question. Daniels should owe nothing.

— Virgie Bright Ellington; New Rochelle, New York

This article goes much deeper than simply exploring lack of treatment in the emergency room. It’s about callous treatment, which is unacceptable on many levels. The ER provided poor care and wasn’t busy, but because the unseen patient was only feeling unwell and not bleeding from every orifice, she wasn’t taken seriously as a priority, so she left. Yet despite not being seen by a doctor, a miscellaneous bill — over $400 — was submitted for payment.

What is pain anyway — feeling uncomfortable? Pain is people dying from triggers in the body. Therefore, treating people like a business by these corporate hospitals is extremely concerning. A person feeling ill, receiving no treatment after four hours of waiting, then leaving the ER with a chronic headache  — which could be anything from a brain injury, an upcoming stroke, or a hemorrhage — should not be charged. And certainly a miscellaneous code should not have been applied for the pleasure of pain, waiting, and the five minutes it took to take her temperature.

No, the insurance company should not pay, and it should also let the hospital know that it will be booted from the network for false claims — spending less-than-adequate time with a patient and then submitting bills.

Laws need to be mandated, and advocates must demand optimum care, with healthcare providers abiding by the Hippocratic oath.

People are not stick figures to be treated carelessly and then charged fully. Every time a baseless claim is submitted by the hospital to the insurance company, there’s a trickle-down effect, and rates go up.

It’s akin to being charged for walking on the sidewalk outside a grocery store, checking the fruit stands, getting help from the outside clerk, and then being charged by the store — despite not making a purchase.

Bad service serves no one and will backfire on the provider in the end. How many times do we have to check management at the door for not understanding that very concept? Far too often. We need to show that medical disregard and abuse are not tolerated. It’s essential to pursue change at the federal and state level. Why? Because, ultimately, hospitals are taking advantage of people. They’ve forgotten why they exist.

— Tiff Gadison; Sacramento, California

Living Under the Government’s Thumb

It’s not a good feeling to know that the government has the upper hand and pulls the strings (Health Hub: “Sticker Shock at the Doctor’s Office Could Motivate Midterm Voters,” Sept. 18). Here it is, 2026, and this single mother still struggles — but even more so with talks of cuts and funding to programs I and so many others depend on.

I was interviewed back in November 2018 about an absurd medical bill I received and was expected to pay, even though I have Medicare and Medicaid. Jay Hancock wrote my story, which aired on All Things Considered (Bill of the Month: “Chronically Ill, Traumatically Billed: The $123,000 Medicine for MS,” Nov. 28, 2018). It also appeared on CBS Mornings with Gayle King.

Things definitely haven’t gotten any better for me. I worry about not only my health insurance and my medication but the fact I am on permanent disability. The state of the nation under the current administration is pretty frightening. My Social Security/SSI is my only means of getting by. I receive EBT (electronic benefits transfer for food assistance), and I have a family to feed. I live in government-subsidized housing, based on my income. So pretty much my whole life is controlled by the actions of folks who probably have zero clue how it is to live on a fixed income and with a chronic health condition, one in which stress exacerbates the symptoms, as well as being a single parent.

Don’t even mention being able to afford the price of gas; my car will sit more than go now. I have to pick and choose when to run errands, usually on a day I already have a scheduled appointment. That not only causes me lots of anxiety, but the fatigue is relentless! This is a very stressful, unnerving way to live.

— Shereese Hickson; Niles, Ohio

Uniting for Good

I’m writing on behalf of students with the American Lung Cancer Screening Initiative (ALCSI). Our team recently came across Noam N. Levey’s Common Ground article “‘Cancer Doesn’t Care’: Citizen Lobbyists Unite To Push Past Washington’s Ugly Politics” (Oct. 21, 2025), and its message about cancer bringing people together across political divides strongly resonated with our team.

I wanted to share a recent development in California that reflects a similar idea. A lung cancer screening awareness bill that began as an idea from a small group of California college students was signed into law by Gov. Gavin Newsom on Sept. 28, after receiving support from legislators of both parties.

As students passionate about lung cancer screening awareness, our team began exploring legislative action to improve screening rates. In March 2025, we developed the initial proposal that ultimately became California SB 1124 and continued advocating for the bill throughout the legislative process until it was signed into law.

Lung cancer is the leading cause of cancer-related death in the United States. Screening can catch the disease at an earlier, more treatable stage, but many people eligible for lung cancer screening don’t know they qualify or that screening is available to them. SB 1124 addresses that gap by requiring tobacco retailers across California to post signage about lung cancer screening at the point of sale, reaching people where they already are rather than relying on them to seek out the information. Considering that California has historically been one of the states with the lowest lung cancer screening rates, this action is crucial.

The bill was introduced by Sen. Bob Archuleta (D–Pico Rivera). Through grassroots outreach, students involved with this bill initiative helped build a coalition of support from organizations across California and the country, including the California Academy of Family Physicians, the American College of Surgeons, and the NAACP California Hawai‘i State Conference, among dozens of others.

Our experience really echoed what stood out to us in Levey’s article: that cancer can bring together people who may disagree on plenty of other issues. We also hope our experience shows that young people can have a meaningful voice in that process and contribute to bringing people together around a shared public health goal.

— Elaine Dong; Los Angeles

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

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Experimental peptides have become darlings among influencers, chiropractors, and doctors focused on longevity, antiaging, or “body optimization,” even though the FDA hasn’t approved them for safety or effectiveness. Health secretary Robert F. Kennedy Jr. and other leaders of the Make America Healthy Again movement have pushed to make unproven peptides more accessible — and they’ve gained traction.

On Oct. 14, a temporary “access policy” appeared on a White House docket, proposing to allow licensed pharmacies to make and sell certain unapproved peptides to people. Scientists at the FDA had advised against the measure at a meeting in July, warning that the drugs hadn’t been adequately vetted in clinical trials.

A panel that advises the FDA disagreed, however, voting to loosen restrictions. Many of the panel members are new appointees with financial stakes in the peptide industry. In an email, Department of Health and Human Services spokesperson Emily Hilliard said that every committee member satisfies the FDA’s ethics requirements.

“I voted ‘yes’ for patient safety, the greater good, and medical freedom,” Haleem Mohammed, one of the new committee members, said at the FDA meeting. He’s the chief medical officer of a men’s clinic that sells peptides, Gameday Men’s Health.

To make good decisions, consumers need to rely on accurate information, but much of the hype around peptides is misleading. KFF Health News flags four misleading phrases commonly used by those promoting peptides — and one truth.

Red Flag: Peptides aren’t drugs.

Gary Brecka, a co-chair of the MAHA Action committee, says peptides aren’t drugs in this episode of his podcast. He talks about using them to “help regulate cortisol, improve circulation, all kinds of things.” When peptides are used to treat, prevent, or cure conditions, or to affect the body’s function, they are, by definition, drugs.

“Peptide” is a general term for substances that are smaller than proteins but made of the same building blocks. Humans make many peptides, including insulin. Insulin is a drug when people inject it to regulate blood sugar.

“Most of the drugs we have had some antecedent in nature,” said Jacob Sherkow, a professor of law specializing in biotechnology at the University of Illinois Urbana-Champaign. “Heroin is natural. No one in their right mind would call it not a drug.”

Brecka did not respond to requests for comment, but Chris Woodward, a public relations representative for him, said in an email that the health issues discussed on Brecka’s podcast do not constitute medical advice.

Red Flag: Peptides are safe because they’re natural.

Peptide promoters have suggested that peptides are safe because they’re natural. This clip of Brecka’s discussion with Brigham Buhler, a co-author of The Peptide Revolution and owner of a compounding pharmacy that sells peptides, is an example. Some influencers go further, saying that peptides are safe because they’re made by the human body. Buhler did not respond to requests for comment.

It’s murky territory. One of the most popular experimental peptides, BPC-157, was developed by Croatian scientists who isolated what they called “body protective compound” from gastric juices in the stomach lining. However, researchers have been unable to find a trace of BPC in the human genome, meaning it’s not made by humans, said Katrin Svensson, a peptide scientist at Stanford University. Researchers in Taiwan suggest the peptide is produced by stomach microbes, according to Undark magazine.

Even if BPC-157 and other peptides exist in nature, Svensson said, “natural things can be toxic.” People have died from taking too much insulin, for example. And drugs considered safe can still make people feel ill. To learn about safety, and whether the benefits of a drug offset the side effects, researchers conduct placebo-controlled trials. These reveal problems that might not be obvious in the short term, such as liver damage, as well as underlying conditions that could turn minor issues into something serious.

The FDA is considering lowering restrictions on BPC-157 and five other experimental peptides that have not undergone high-quality clinical trials and are not FDA-approved. “I am excited about peptides too,” said Svensson, whose lab studies several peptides that she hopes to develop into drugs. “But,” she added, “you need to show they’re not harmful.”

Red Flag: These peptides treat illnesses and heal injuries.

Kris Wusterhausen, one of the new appointees to the FDA advisory panel, has said that the experimental peptide BPC-157 “can reduce [acid] reflux disease” and treat “neurologic disorders.” He’s the founder of an antiaging company that sells the peptide and advertises “clinically guided peptide treatments.” He did not respond to requests for comment.

Such claims are common among peptide promoters who say that various experimental peptides treat muscle injuries, covid, inflammatory bowel disease, and more. But vanishingly few clinical trials have been conducted.

A summary of a small clinical trial testing BPC-157 as a treatment for inflammatory bowel disease was published in 2005, but it lacked critical details about how the study was conducted. FDA scientists who reviewed the summary called it “inadequate.”

Another small study concluded that BPC-157 relieved knee pain for 14 of the 16 patients involved, but it lacked a control group, meaning the participants might have felt better because of other factors, or their pain simply resolved over time.

In a 2025 review of research on BPC-157 as a treatment for musculoskeletal injuries, researchers warned that it should be “approached with caution” because of a lack of evidence. Flynn McGuire, a physical rehabilitation doctor at the University of Utah and an author of the review, said anecdotes about people having miraculous recoveries are even less reliable.

He has told patients he won’t prescribe BPC-157 until quality studies are conducted. “People want new things quickly,” he said, “but medicine and science just don’t work fast.”

Peptide enthusiasts also tout laboratory studies, such as a particular peptide stimulating blood vessel growth. Such research is critical, but it doesn’t speak to safety, efficacy, or off-target effects in people, like fueling cancerous growths. Human biology is complicated, which is why most substances that show promise in early experiments fail in clinical trials.

Red Flag: Peptides can’t be patented.

Before taking the helm of the Department of Health and Human Services, Robert F. Kennedy Jr. posted about peptides on X. (Screen grab of X)

A few months before Kennedy took charge at HHS, he suggested on the social media platform X that the FDA hindered access to peptides and other alternative therapies because they couldn’t be patented. It’s a common misconception about peptides: In an analysis of Reddit posts about the drugs, researchers found many posts suggesting that mainstream medicine has sidelined peptides because pharmaceutical companies cannot patent the substances and therefore can’t turn a profit.

Yet hundreds of peptide patents are listed in the U.S. Patent and Trademark Office database. A patent on an early formulation of BPC-157 is for sale.

“One cannot obtain a patent on the natural thing itself,” Sherkow said, “but if you slightly modify it, link it to something that allows me to inject it, formulate it to be more stable, all of that stuff is patentable and is being patented.”

Peptide patents can be lucrative. Pharmaceutical companies are suing one another over patents surrounding GLP-1 peptides, the basis of Ozempic and other such weight loss drugs. The market for those medicines is projected to reach $190 billion within the next decade, according to the investment bank Morgan Stanley.

So why haven’t pharmaceutical companies invested in clinical trials on popular peptides? Clinical trials cost millions of dollars, so companies first must be convinced the drugs look promising enough for FDA approval, as well as have an edge over current medications.

Companies conduct experiments before investing big bucks. They may have done so for certain peptides and been discouraged by the results, Svensson said.

Pinchas Cohen, a gerontology scientist at the University of Southern California, said investors backed out of funding trials on a peptide he helped discover, MOTS-c, because they worried its use overlapped with GLP-1 medications. “Investors felt we couldn’t compete with that,” he said.

Kennedy’s push to make experimental peptides more accessible might make clinical trials even more unlikely, researchers say, because compounding pharmacies wouldn’t need FDA approval to sell the drugs for human use.

In a letter to the FDA, the pharmaceutical trade organization PhRMA advised against easing restrictions on unapproved peptides, saying it would “erode incentives for manufacturers to undertake the substantial time and cost required for FDA approval.”

True: Americans aren’t as healthy as they could be.

Kennedy and other leaders of the MAHA movement are right when they say the U.S. spends more on healthcare per person than any other nation and ranks below all other wealthy nations in life expectancy. They also rightly note the high cost of treatment. Six in 10 U.S. adults said they worried about affording prescription drugs in a recent KFF poll, with 4 in 10 saying they’ve skipped doses or taken other measures because of the price.

Researchers have outlined policies to lower healthcare costs and improve public health, such as limiting drug monopolies and improving access to healthy food. What’s not on the list: skipping clinical trials to sell unproven treatments that could harm people.

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

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Late last month, the Trump administration announced that it had cut 760,000 people from the Affordable Care Act rolls, claiming fraud and improper enrollments and touting billions in potential taxpayer savings.

Not all of those kicked off were fraudulently enrolled, KFF Health News has learned. Insurance industry sources said the Centers for Medicare & Medicaid Services has reinstated a small number of people whose coverage should not have been canceled. More could follow in the coming weeks if enrollees discover they are uninsured when they go to use their coverage.

Still, the sweep was long overdue, say supporters such as Brian Blase, whose Paragon Health Institute has supplied many of the sometimes controversial findings cited by those who allege widespread enrollment fraud in the ACA. But other policy experts question how many legitimate consumers were caught in the dragnet, perhaps because they failed to open a letter from their insurer or answer a phone call.

Questions continue to swirl, even as a second phase of the anti-fraud effort is underway. An additional 419,000 sign-ups are being scrutinized. Insurers must let CMS know how many of those enrollees don’t respond to outreach efforts by “around mid-to-late November, after the midterm elections,” said David Merritt, senior vice president of external affairs at the Blue Cross Blue Shield Association.

He confirmed that some BCBS members are among those who have been reinstated. He also said that CMS has an expedited review process for those who discover they have been improperly disenrolled.

Overall, however, the administration is providing few details about the cancellations, such as how robust the outreach was to those it targeted, how long it takes for people to get reinstated after discovering their coverage was wrongly canceled, and how many such cancellations have been reversed.

“It may be true that some of those enrollments were not authorized, but it can be equally true that people got lost in the shuffle and have a valid enrollment. Without more information, it’s almost impossible to tell,” said Katie Keith, a director of the Center for Health Policy and the Law at Georgetown Law. “That they are not being very transparent is telling too,” she said of the administration.

The enrollment cut comes as part of a larger Republican strategy to focus on fraud in government programs, including Medicaid and hospice care, which polls show resonates with GOP voters.

At an Oct. 14 press conference, Health and Human Services Secretary Robert F. Kennedy Jr. and CMS Administrator Mehmet Oz touted the removal this year of subsidies for about 189,000 ACA enrollees with duplicate Medicare, Medicaid, or Children’s Health Insurance Program coverage, citing not fraud but a failure to look for concurrent enrollments or continued coverage for dead people. They credited an effort begun last year by the Trump administration to restore more frequent data matching checks than were done under the prior administration.

Unauthorized sign-ups by rogue insurance agents seeking commissions and other potential impropriety in the ACA marketplace — applicants’ providing incorrect income estimates, for example — has been a concern for several years, with much debate over the magnitude of the problem.

Even so, how the recent move to cancel the 760,000 enrollments will play out politically is uncertain. Healthcare costs are tied with gas prices as a top concern for voters. It is likely that many removed from the ACA are in red states, such as Texas, Florida, Louisiana, and Mississippi. Those areas saw rapid growth in ACA enrollment from 2020 to 2025, driven in part by now-expired enhanced subsidies put in place during Joe Biden’s presidency. Additionally, the cancellations target only enrollees in states that use healthcare.gov, the federal ACA marketplace. The 21 states fully running their own marketplaces generally have more robust fraud prevention programs, such as multifactor authentication, and have reported few or none of the kinds of unauthorized sign-ups plaguing the federal marketplace.

“To the extent there is a reaction depends on whether the government got it wrong, whether people try to get care and then find out their coverage is no longer active,” said Adrianna McIntyre, assistant professor of health policy and politics at the Harvard T.H. Chan School of Public Health.

How It Played Out

According to information the agency provided to KFF Health News, CMS in June selected for further review nearly 1.2 million enrollments that had all of what it deemed four warning signs for fraud:

• The application included no Social Security number or immigration document number.
• A broker was involved in the sign-up process.
• The plan had no monthly premium payment.
• The enrollee had had no contact with their insurer and no claims filed.

Then, as first reported by KFF Health News, CMS sent lists of those ACA accounts to specific insurers, instructing the carriers to review them and use at least two methods of contact — such as a phone call and a letter — to try to reach the enrollees. Policyholders were given 30 days to respond to the insurers’ outreach and provide the missing information. CMS disenrolled those who didn’t respond.

Johnny Wallin, chief operating officer of Texas-based Marketplace Insurance Exchange, which helps clients in about 35 states enroll in coverage, said insurers reached out to his organization for help contacting people on the CMS lists, prompting “an all-hands-on-deck” effort by agents to reach clients, some of whom were vacationing overseas.

“Getting them to answer the phone isn’t easy,” he noted, although he suspects his agents had a better chance of getting a reply than an insurer because their clients are familiar with their phone numbers. Still, they could not reach about 60 of them.

Additionally, his team has been asked by insurers to help contact those targeted in the second phase of CMS’ review. A recent case involved a client who needed to upload his new green card after his previous one expired, but language barriers meant that he had to take time off work to come in for agents to help with the process.

CMS would not provide a list of the insurers it contacted, but publicly available documents show that New York-based Oscar Health was one.

In an August earnings call with analysts and investors, CEO Mark Bertolini said the company was reviewing the files and that “there are a number of cases where we’ve actually had contact” with people on the list. In other words, the company reached enrollees CMS had targeted over fraud concerns.

He did not specify how many it had reached. The company declined to comment for this article because it is in a voluntary “quiet period,” when publicly traded companies limit disclosing information before the release of an earnings report.

Still, in a filing with the Securities and Exchange Commission, Oscar Health estimated that 250,000 to 300,000 of its members might be disenrolled because of the CMS effort. Nationally, the company had about 3 million members in the second quarter and reported strong profits.

A Smaller Patient Pool

Overall ACA enrollment has declined sharply, falling by nearly 3 million in the first few months of the year, due in large part to the expiration at the end of last year of the enhanced subsidies. The Trump administration has also taken some credit, saying its focus on weeding out improper enrollments and other changes, such as eliminating a special year-round low-income enrollment period, led to the decline.

CMS has also suspended some brokers for improper activity and barred new brokers from enrolling clients in ACA insurance on the federal exchange during the upcoming open enrollment period.

CMS did not respond to requests for data on the reasons it canceled enrollments. What percentage of enrollees were deemed ineligible due to incorrect income reporting or because they had other health coverage, such as through their jobs? How many because their ACA applications lacked immigration documents or Social Security numbers?

“Currently, there is no additional data to share,” the agency’s press office said.

But people outside the administration have been vocal.

“This was clearly phantom enrollees,” said Paragon’s Blase. He thinks more than 99% of the cancellations are of zero-premium coverage that people were signed up for by rogue call centers without their knowledge, or for people who don’t exist at all.

Blase said the carriers had a big incentive to get hold of the enrollees because they would lose the subsidies they were being paid if the plans were canceled.

And for any people unfairly caught up, Blase and Trump administration officials say all they have to do to be reinstated is call the marketplace and provide their Social Security number or other missing information.

“Everyone has the political incentive for that process to be that easy,” Blase said. “We’re a month before the election.”

But, as prior reporting has shown, it isn’t always a quick process to get an ACA plan canceled or reinstated following an unauthorized sign-up or switch, even when a consumer discovers it themselves and reaches out to the marketplace.

Brokers and policy analysts note that some of the factors used to question enrollments — such as a plan’s having no claims filed in a year — are not that unusual because many people don’t visit a doctor or hospital in a given year.

Insurers “want those healthy people in the insurance pool to help bring down the rates,” said Ronnell Nolan, president and CEO of Health Agents for America, a trade group for health insurance agents. “We’re against fraud, and CMS has allowed a lot of fraud to happen. But we don’t want people who just didn’t go to the doctor to be canceled.”

And even with the outreach required by CMS, not everyone answers phone calls from unknown numbers or opens their mail or emails.

A recent marketing report found an average “open rate” on emails of 28.6%.

Policy experts also note that, while lack of a Social Security number on an ACA application could indicate a fake enrollee, it might also be an oversight, or the number might not be required, like for a child if the person applying is an adult who is not seeking coverage for the child.

“There will be legitimate people who don’t have a claim or don’t respond to an inquiry from an insurer,” said Matthew Fiedler, a senior fellow at the Brookings Institution. “If the goal is to target fraudulent enrollment, what CMS did is better than tossing people at random, but is likely to miss the mark.”

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

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

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

This week, Trump administration officials announced their latest efforts to trim what they identified as duplicative and ineligible enrollees from government health programs. They tied the efforts to the administration’s broader crackdown on waste, fraud, and abuse — just as some states are opening polling stations for early voting.

The outcome of the midterm elections is expected to affect how and whether Congress addresses several healthcare issues during the lame-duck session, not the least of which is government spending. Plus, Health and Human Services Secretary Robert F. Kennedy Jr. unveiled a new initiative to identify vaccine injuries, complete with a ribbon-cutting ceremony at the National Institutes of Health.

This week’s panelists are Mary Agnes Carey of KFF Health News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health, Sandhya Raman of Bloomberg Law, and Paige Winfield Cunningham of The Washington Sun.

Panelists Joanne Kenen Johns Hopkins University @JoanneKenen @joannekenen.bsky.social Read Joanne's bio. Sandhya Raman Bloomberg Law @SandhyaWrites @sandhyawrites.bsky.social Read Sandhya's stories. Paige Winfield Cunningham The Washington Sun @pw_cunningham Read Paige's stories.

Among the takeaways from this week’s episode:

• Federal health officials this week pointed to their efforts to cut Affordable Care Act plan subsidies from people who were dead or found to have duplicate coverage under government health programs. While they were careful to say that these cases were not fraud, they tied their housekeeping activities to the Trump administration’s broader crackdown on waste, fraud, and abuse — and made that point just as some states are beginning early voting.
• The outcome of the midterm elections is expected to shape how Congress spends its time during the coming lame-duck session, with benefits or repercussions for health policy. Should the Democrats win control of one or both chambers, for instance, the party’s leaders could push to hold off on tackling government spending until they have more clout next year. Among the issues on the table are changes to the No Surprises Act, which has shielded patients from many bills but also has come under criticism for problems with the arbitration system it created.
• And Kennedy is pursuing a new initiative on vaccine injuries, opening a designated clinic at the NIH. The federal health department has also proposed reimbursing medical professionals for reporting vaccine-related injuries.

Also this week, KFF Health News’ Julie Rovner talks with Dan Weissmann, host of the healthcare podcast An Arm and a Leg, about the new and even more confusing landscape for Medicare enrollees as open enrollment begins.

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

Mary Agnes Carey: KFF Health News’ “People Say These Peptides Hurt Them. Their Stories Are Muffled in MAHA’s Push for Medical Freedom,” by Amy Maxmen.

Sandhya Raman: Stat’s “Helen Branswell, Whose Reporting on Infectious Diseases and Public Health Drew Acclaim, Dies at 69,” by Andrew Joseph.

Paige Winfield Cunningham: KFF Health News’ “AI, Tech Leaders Are Lobbying Trump Health Officials in a Government-Run Chat Room,” by Amanda Seitz, Maia Rosenfeld, and Darius Tahir.

Joanne Kenen: On CBS News’ Face the Nation, host Margaret Brennan’s interview with Shyam Sankar, chief technology officer at Palantir. (Read the transcript here.) 

Also mentioned in this week’s podcast:

• Reuters’ “Trump’s $500 Obamacare ‘Rebate’ Checks Land in Prime Political Battlegrounds,” by Andy Sullivan, Helen Coster, Ahmed Aboulenein, and Tim McLaughlin.

Credits Francis Ying Audio producer Taylor Cook Audio producer Emmarie Huetteman Editor

Click here to find all our podcasts.

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

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

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Most hospitals offer financial assistance to patients who struggle to afford their bills, often referred to as charity care. But many people are stymied by cumbersome aid applications. Others don’t even know help exists.

Hospitals have the ability to proactively screen patients to see if they’re eligible for aid and, if so, automatically wipe out or reduce their bills — a process known as presumptive eligibility.

A growing number of state policymakers and researchers believe requiring hospitals to use presumptive eligibility would protect low-income Americans from falling into medical debt, especially with federal funding cuts expected to increase the number of people without health insurance.

Data shows that Texas has among the highest state rates of people in medical debt, and policymakers in Texas are considering legislation that would require nonprofit hospitals to use presumptive eligibility before sending patients a bill.

In a first-of-its-kind analysis, Tradeoffs examined the presumptive eligibility policies of 166 nonprofit general and children’s hospitals in Texas. The goal was to shed light on how easy or difficult hospitals make it for low-income people to get financial aid without an application.

Scroll to the bottom of the page to explore a searchable table with all 166 hospitals’ policies.

Here’s what we found:

1. Nearly half of nonprofit hospitals in Texas (44%) say they will bill patients before screening them for free or discounted care.

Some hospitals screen patients after sending a single bill. Others may send multiple bills and hire collection agencies to chase after debts before they check whether a patient is eligible for help.

The most common approach is for hospitals to say they will screen patients before taking “extraordinary collection actions,” which include garnishing their wages, selling the debt to a debt collector, or denying further care until outstanding bills are paid.

Anna Stelter, vice president of policy for the Texas Hospital Association, said hospitals want to investigate other options for payment — like Medicaid or county safety net programs — before they offer financial assistance.

“We do want to make sure that whoever is financially responsible for that care is identified and pays,” Stelter said. “Charity care is the relief of last resort.”

Just one nonprofit in Texas, Memorial Hermann Health System, has a written policy that requires its hospitals to check and proactively reduce or wipe out what patients owe before sending bills.

Research shows that when patients receive financial aid makes a difference.

A 2022 study found that patients who received hospital financial aid within weeks of care were much more likely to return to the doctor and get treatment for conditions like diabetes and depression. Conversely, a landmark study published in 2024 found that wiping out people’s medical debt years later had no effect on their mental and physical health, healthcare use, or financial situation.

2. Most hospitals say they do not reimburse patients who qualify for financial aid for money they have already paid.

Hospitals often put patients on payment plans to chip away at bills they can’t afford. But only 10 of 166 nonprofit hospitals in Texas guarantee a full refund to patients found to be eligible for financial aid. Most others say they won’t return money that patients paid before being screened.

Surveys show patients take out loans and rack up credit card debt to cover what they owe. In one recent survey, one-third of Americans without health insurance said they had borrowed money for medical care in the previous year.

“It is very frustrating,” said Aimee Carlock, who was required to pay $5,500 to Texas Health Resources to schedule uterus surgery. She later qualified for free care, and the hospital wiped out her remaining $16,000 bill. But the $5,500 was gone. “That’s a lot of money to me,” said Carlock, a self-employed housecleaner who was recently approved for food stamps.

Texas Health’s policy offers refunds only in the amount a patient has paid in excess of what the hospital typically charges someone with insurance. All hospitals must offer refunds to patients who qualify for financial aid in these situations to avoid federal penalties.

Texas Health didn’t respond to an interview request after Carlock agreed to grant the system permission to speak about her experience.

In some cases, patients must fill out extensive applications to recoup their money. The application for Abilene-based Hendrick Health instructs patients to “completely and precisely” fill in financial and personal details, describing their savings and listing Social Security numbers for family members they live with who might help with the bills. Patients must submit two current pay stubs, a tax return, two months of bank statements, and a justification of why they need help.

“Explain circumstances in which paying this hospital bill would create a hardship,” the application says.

Hendrick Health didn’t respond to questions about its policy.

3. Many hospitals never tell patients that their debt has been forgiven.

Some of the largest nonprofit hospital systems in Texas don’t notify patients when their bill has automatically been wiped out. That includes Christus Health, Texas Health Resources, and Texas hospitals owned by CommonSpirit Health, one of the nation’s largest Catholic health systems.

Research shows patients who don’t know their debt has been forgiven may skip needed care. A 2026 study found that people with medical debt were three to four times as likely to delay future physical and mental healthcare as people without medical debt.

“If the patient doesn’t get some sort of notice,” said Erin Fuse Brown, a health policy researcher at Brown University, the possibility that they could be billed “hangs like a sword over their neck.”

Stelter, with the Texas Hospital Association, said many hospitals have limited staff in their billing departments. “Notifying patients whose bill was completely forgiven that they were presumptively eligible is probably lower on the totem pole than helping somebody who’s trying to complete an application,” she said.

If hospitals offer someone less than the maximum discount available, federal law requires the hospital to notify the patient, in case they want to appeal for a full write-off.

Texas Health and Christus Health didn’t respond to interview requests about their policies. A CommonSpirit spokesperson declined an interview.

4. Some hospitals say their financial assistance policies don’t reflect how they actually operate. These discrepancies can work to patients’ advantage — or detriment.

AdventHealth says some of its Texas patients get screened for financial assistance before getting bills, a consumer-friendly practice. The system’s policy, however, has no requirement for when hospitals must screen patients.

“We want patients to understand and have access to available financial assistance before receiving a bill whenever possible,” said Tim Reiner, senior vice president for revenue cycle for the system, which owns and operates four hospitals in Texas.

Houston Methodist also screens patients for help before sending bills, if they are uninsured, a spokesperson said. There is no requirement for its eight hospitals to do so under the system’s policy.

According to its policy, Covenant Health, a five-hospital system based in Lubbock, must screen patients before sending bills to collection agencies and lists detailed criteria for who is eligible to have bills proactively wiped out.

But in 2019, the system decided not to use presumptive eligibility “due to the regulatory requirements and administrative complexities,” said spokesperson Ainsley Nelson. “Our focus continues to be ensuring compassionate access to care and helping patients navigate the financial assistance options available to them.”

Covenant is owned by Providence, a multistate Catholic health system based in Renton, Washington, which agreed to refund or erase more than $150 million in patient bills after investigations charged that the system failed to inform patients of charity care.

Providence said the system fixed the problem identified by investigators, refunded patients, and now coaches its employees to communicate “with compassion and respect.”

5. Who qualifies for presumptive eligibility varies significantly from one hospital to another.

Hospitals in Texas get to decide who is eligible to be automatically screened for and enrolled in financial assistance.

Presumptive eligibility policies often apply to people who are homeless, deceased, or already enrolled in state or federal programs to help low-income households with medical care, housing, food, or prescriptions. Some hospitals have additional criteria, including writing off bills for anyone in a religious order who took a vow of poverty.

Some hospitals share little to no public information about who they will proactively screen. Thirteen hospitals owned by Ascension, one of the nation’s largest Catholic health systems, say only that it may screen patients “with a sufficient unpaid balance.”

Ascension didn’t respond to questions about its eligibility criteria.

This variation means that a patient’s ability to access free care depends greatly on where they go.

6. Some hospitals provide less generous charity care to patients who receive it automatically instead of submitting an application.

At CommonSpirit’s hospitals across southeastern Texas, patients who are auto-enrolled get help with debt from the prior 12 months. Patients who submit an application get the same help with prior bills, plus free or discounted treatment for the next six months.

North Texas Medical Center limits financial assistance for auto-enrolled patients to individual visits. Applicants may be eligible going back 12 months before approval.

North Texas Medical Center didn’t respond to additional questions about its policy.

7. Policies that are supposed to be easily accessible to patients are often difficult to find.

Hospital financial assistance policies are intended to be transparent to patients and the public. For more than a decade, federal law has required nonprofit hospitals to widely publish their policies.

In practice, finding these policies and deciphering them is often hard.

To find the policies of all nonprofit hospitals in Texas, Tradeoffs started with a list of hospital financial assistance policy websites maintained by the nonprofit Dollar For. To verify websites were up to date and fill in missing policies, Tradeoffs scoured hospital websites, often clicking through multiple links to locate policies.

In cases in which hospitals did not publish full policies online, Tradeoffs requested copies from hospitals and filed a public records request with the state of Texas, which requires hospitals to submit charity policies annually.

“You would have to know what you’re looking for before you went looking for it, or you’re never going to find it,” said Ray Kluender, an associate professor at Harvard University, who has had to hunt for hospital policies as part of his research on medical debt.

This article is part of Hidden Help, an investigative series from Tradeoffs and KFF Health News about how hospitals can protect their patients from the life-altering harms of medical debt.

Tradeoffs is a nonprofit newsroom reporting on healthcare’s toughest choices. Sign up for the weekly newsletter to get the latest stories every Thursday morning.

Tradeoffs’ reporting for this series was supported, in part, by the California Health Care Foundation, the National Institute for Health Care Management Foundation, and the Solutions Journalism Network.

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

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Aimee Carlock needed surgery in August 2025 to treat severe pain and bleeding from her uterus. But first, she needed to come up with $5,500.

Texas Health Resources, one of the state’s largest nonprofit hospital systems, told her it wouldn’t schedule the procedure unless she paid up front, Carlock said. The self-employed house cleaner didn’t have the money.

“I panicked because I live paycheck to paycheck,” she said. “I have no extra money whatsoever.”

Carlock borrowed cash from her best friend and parents. Her father offered money he inherited when Carlock’s grandfather died a few years ago.

Only after the surgery did Carlock, 35, learn she qualified for hospital financial aid. Her care should have been free, but the system doesn’t give full refunds. The $5,500 was gone.

Carlock’s poor health has kept her out of work most of this year. She took out loans for groceries and utilities and applied for food stamps. It will take years, she said, to chip away at what she owes.

“I’m just trying to pick myself back up,” Carlock said. “But it’s really hard.”

Hospitals have a tool to automatically screen people like Carlock for financial aid and grant them relief — a process known as presumptive eligibility. But if, when, and how hospitals deploy this tool is largely up to them; there are few state or federal requirements.

A Tradeoffs investigation found that in Texas nearly half of nonprofit hospitals say they will bill patients before screening them for financial aid. And most hospitals will not offer refunds to patients who pay and are eventually found to qualify for free care.

Many patients are unaware that hospitals offer financial help, often known as charity care. Others are stymied by onerous applications that require people to turn over financial information, such as bank statements, car notes, pay stubs, retirement accounts, and even divorce records.

“It’s like going through a tax audit,” said Stanford University health economist Neale Mahoney, who studies medical debt. “The current system is broken.”

An estimated 100 million adults in the U.S. have healthcare debt, according to a KFF Health News analysis. That includes amounts people owe to hospitals and doctors, as well as loved ones, credit card companies, and banks. This debt can be life-altering, forcing people to take on additional jobs, push off retirement, or cut back on essentials like groceries and medical care.

Tradeoffs analyzed the financial assistance policies of all 166 nonprofit general hospitals and children’s hospitals in Texas, which has higher rates of people in medical debt than most states.

The analysis is believed to be the first detailed look at presumptive eligibility policies of nonprofit hospitals, which typically don’t pay income, sales, and property taxes. They get these tax breaks in exchange for providing community benefits, such as financial assistance. Lawmakers and regulators in recent decades have questioned whether nonprofits do enough to earn those tax breaks.

Since 2020, a wave of states, including Texas, have debated or adopted requirements for hospitals to use presumptive eligibility in financial assistance to protect patients from avoidable debt.

“This is clearly an industry that is not policing itself very well,” said Tom Oliverson, a physician and Texas lawmaker who has proposed legislation to require hospitals to screen patients before sending a bill.

Automatic screening is a good option to help some patients, said Anna Stelter, vice president of policy at the Texas Hospital Association. But often, she said, there are other payment options, such as insurance, which hospitals need to pursue first. “Charity care is the relief of last resort,” she said.

“I’m just trying to pick myself back up, but it’s really hard,” says Aimee Carlock, who had to borrow money to prepay $5,500 for uterine surgery — money the hospital system, Texas Health Resources, held on to even after wiping out the rest of her bill under its financial aid policy. (Laura Buckman for KFF Health News and Tradeoffs)

Most Texas Hospitals Can Automatically Give Help

To identify nonprofit hospitals in Texas, Tradeoffs consulted state and federal records and a list of hospital policies maintained by Dollar For, a group that helps patients apply for financial assistance. To verify policies were up to date, Tradeoffs scoured websites, often clicking through multiple links to find policies. When policies were missing, Tradeoffs reached out directly to hospitals and filed public records requests with the state, which requires hospitals to submit policies annually.

Tradeoffs’ analysis found that nearly every Texas nonprofit hospital can screen and proactively reduce bills when patients are found eligible for help.

Nationally, around 90% of nonprofit hospitals reported the same in 2022, according to an analysis of federal data for Tradeoffs by the independent research institute RTI International. That’s up from 72% six years earlier.

Hospitals’ use of automatic financial aid can be traced, in part, to the Affordable Care Act, which added protections for patients. The law created stiff penalties for hospitals that aggressively go after payment without trying to identify whether patients need help. Presumptive eligibility is one way to comply with the law.

Covenant Health, a five-hospital system based in Lubbock, was the only system in Texas to say it does not automatically grant financial aid, though its policy allows it.

Covenant doesn’t use the option “due to the regulatory requirements and administrative complexities,” said Ainsley Nelson, the system’s spokesperson. “Our focus continues to be ensuring compassionate access to care and helping patients navigate the financial assistance options available to them.”

Tom Oliverson, a physician and Texas state representative, is pushing legislation that would require nonprofit hospitals in the state to screen low-income patients for financial aid and automatically discount or write off patient costs before sending bills. (Danielle Villasana for KFF Health News and Tradeoffs)

Bill First or Screen First?

About 8% of hospitals in Tradeoffs’ analysis have policies that require screening patients for charity care before sending a bill.

Far more, 41%, say they screen patients before turning unpaid bills over to debt collectors or taking more aggressive actions, such as garnishing wages, placing a lien on property, or denying further care without payment.

Southeastern Texas hospitals owned by CommonSpirit Health, for example, will automatically wipe out bills only “after all other eligibility and payment sources have been exhausted,” according to its Texas financial assistance policy.

CommonSpirit declined an interview request.

Research shows the sooner patients get financial aid, the better it is for their health.

One study found that people were more likely to be diagnosed and treated for conditions like depression and diabetes and make follow-up appointments when they received financial aid within weeks of receiving care. A separate study of people who had medical debts wiped out after months or years found no health benefit from the relief.

The signal is clear, said Ray Kluender, an associate professor at Harvard University, who worked on both studies. “The timing of when financial assistance is provided by a hospital is just extraordinarily important.”

Some hospitals told Tradeoffs that what they do isn’t always written in policy. For example, spokespeople for AdventHealth and Houston Methodist say their systems screen some patients before sending bills — though their policies include no requirement to do so.

When hospitals do wipe out patient costs after sending bills, about 40% say they will not inform patients their balance has been cleared. Just 8% require notification, and the rest say nothing about it in their policies.

“Patients will not be notified to inform them of this decision,” reads CommonSpirit’s policy.

Stelter, with the Texas Hospital Association, said many hospitals have limited staff in their billing departments and would likely prioritize helping patients apply over notifying those who already got help.

“It’s cruel to not notify someone,” said Erin Fuse Brown, a Brown University professor who studies medical debt. “Not to give them the closure to say you can spend that money elsewhere. You can buy your groceries this month. You can fill your prescription because you don’t have to budget for this.”

People with medical debt are three to four times as likely to delay future physical and mental healthcare as people without medical debt, a recent study found.

Hospitals Want To Help Patients — And Get Paid

Texas has for decades required nonprofit hospitals to meet one of a few targets for how much help they give patients — one of which is spending at least 4% of their annual patient revenue on charity care.

Research has found such spending targets have had mixed results. Some hospitals helped more patients, and others scaled back charity care spending or spent less on other community benefits, including training doctors and subsidizing money-losing but essential services.

The Texas Hospital Association touts that almost every hospital in the state offers presumptive eligibility, but Stelter said screening tools can be unreliable.

Before they grant aid, hospitals want to know if a patient might be among the narrow population of adults who qualify for Medicaid in Texas or if a grant might cover their bills — a determination that can require additional time and information.

Stelter also said that providing aid before sending bills could let insurers off the hook. Patients with insurance typically must spend some money before insurers pitch in, known as a deductible. Insurers can hold down consumers’ monthly premiums by raising deductibles, which have climbed to an average of about $2,100 per person for job-based coverage and $3,700 per person for people on marketplace plans.

If they know hospitals will pick up the tab, “what incentive does an insurer have to lower a deductible?” Stelter said.

Hospitals nationwide are expected to come under increasing financial strain since Congress reduced subsidies for many people buying health insurance through the Affordable Care Act, and new federal Medicaid cuts are expected to push millions of low-income Americans off the rolls.

That policy shift leaves hospitals to pick up more of the safety net, which they can’t afford, said Jill Horwitz, a Northwestern University health policy professor.

“It would be wonderful if nonprofit hospitals could solve the problem of Americans being uninsured or underinsured by paying for the free care,” Horwitz said. “But nonprofit hospitals do not have the money to solve what is ultimately a major federal problem.”

‘You Had To Pay It’

Becca Wahl said she knew nothing about financial assistance when she landed in Memorial Hermann Katy Hospital last October with a concussion after fainting in a Walmart.

“I just thought you had a bill and you had to pay it,” said the 33-year-old uninsured yoga instructor.

So when Wahl saw the $38,000 tab for her emergency room visit, she panicked. The bill was more than she makes in a year.

“I thought, ‘I’m doomed,’” Wahl said. “I just went out to get a birthday card and fell over. And now I have $38,000 of debt.”

Becca Wahl received a $38,000 emergency room bill from Memorial Hermann Katy Hospital after getting a concussion from fainting. According to the hospital’s own policy, Wahl qualified for financial aid and should have never received a bill. (Danielle Villasana for KFF Health News and Tradeoffs)

Shortly afterward, the hospital called and revised her bill, offering its price for patients who pay cash, she said. That left Wahl with $11,000 in debt and a $1,000-a-month payment plan — better than $38,000, but still out of reach.

Desperate, Wahl went online and found Dollar For, which helps patients apply for financial aid. One week after Dollar For submitted Wahl’s application, Memorial Hermann wiped out her bill.

Memorial Hermann’s policy says its hospitals should screen patients for financial assistance before sending a bill.

Wahl agreed to waive her patient privacy rights so Memorial Hermann could talk about her case. But the hospital declined an interview request. A spokesperson told Tradeoffs that Memorial Hermann is “dedicated to ensuring that every patient has access to clear information about the expected costs of services, and available coverage options and our financial assistance program.”

Wahl is just glad that she doesn’t have to put her life on hold while she pays off that debt.

“The amount of stress that was lifted off of my shoulders by finding out that this medical debt was forgiven was huge,” she said.

Becca Wahl had no idea she qualified for hospital financial assistance when she received a $38,000 emergency room bill for treating a concussion. “I thought, ‘I’m doomed,’” recalls Wahl, an uninsured yoga instructor. “I just thought you had a bill and you had to pay it.” (Danielle Villasana for KFF Health News and Tradeoffs)

Few Hospitals Give Refunds

Some patients who pay down their bills before hospitals wipe them out never get their money back, Tradeoffs found.

Roughly 2 in 3 nonprofit hospitals in Texas have policies that say patients won’t receive full refunds.

CommonSpirit’s policy has no requirement to refund patients who get automatic financial aid. Felicity Simmons, a system spokesperson, said in an email clarifying its policy that “refunds are case specific.”

A few hospitals say they will return amounts that exceed what the hospital would typically charge someone with insurance — a federal requirement for all facilities. That is the case at Texas Health, where Carlock paid $5,500 up front for her uterine surgery, before the hospital wrote off the rest of her bill.

Carlock’s $5,500 stayed with the hospital.

Carlock agreed to give Texas Health permission to speak with Tradeoffs about her bill. Texas Health didn’t respond.

Stelter with the Texas Hospital Association said hospitals follow federal regulations for refunding patients. Those regulations require hospitals to fully refund some patients who submit an application. The rules don’t apply to those who got help through presumptive eligibility, experts on the regulation told Tradeoffs.

States Seek Standards

By July 2027, six states will require hospitals to use presumptive eligibility for certain patients: California, Delaware, Illinois, Maryland, North Carolina, and Oregon.

Oregon has arguably one of the most aggressive approaches. Starting in July 2024, hospitals had to screen anyone who owes more than $500 and every patient who is on Medicaid or uninsured — before they send a bill. Lawmakers raised the threshold to $1,500 in 2026 amid concerns over imperfect screening tools and the law’s impact on hospital finances.

Hospitals in Oregon more than doubled the amount of charity care they provided, on average, during their first full year under the law, Tradeoffs found. That’s based on an analysis of available Medicare data from roughly two-thirds of hospitals. At OHSU Hospital in Portland, one of the state’s largest, the percentage of patients receiving financial aid jumped from 12% before the law to 64%.

In Texas, state representative Oliverson, a Republican, hopes his state will go even further than Oregon. He proposed legislation in 2025 that would require nonprofit hospitals to screen patients and provide aid before sending bills. Those that don’t would face penalties.

The legislation failed, but Oliverson said he plans to reintroduce it in 2027. The lawmaker said nonprofits are falling short of their obligations.

“If you’re sending bills to people that you know when you finally get around to screening them for charity they’re not going to be obligated to pay,” he said, “that should be grounds for losing your tax-exempt status.”

Oliverson said hospitals that already care for a higher share of low-income patients would be exempt from his proposed requirements. But he’s adamant that most nonprofit hospitals should be doing more to protect patients from unnecessary debt.

“If you’re advertising that you’re willing to accept uninsured patients and that you have a charity program,” Oliverson said, “you got to deliver on that.”

This story is part of Hidden Help, an investigative series from Tradeoffs and KFF Health News about how hospitals can protect their patients from the life-altering harms of medical debt. Read our full data analysis methodology.

Melanie Evans is a reporter for Tradeoffs, a nonprofit newsroom reporting on healthcare’s toughest choices. Sign up for the weekly newsletter to get the latest stories every Thursday morning.

Tradeoffs’ reporting for this series was supported, in part, by the California Health Care Foundation, the National Institute for Health Care Management Foundation, and the Solutions Journalism Network.

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

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

The pitch behind California’s billionaire tax proposal is simple: Tax the richest residents in the nation’s wealthiest state to offset steep federal cuts to healthcare, food assistance, and education.

But if approved by voters in November, it’s unclear how much money the ballot initiative would raise, how quickly the funding would become available, and how lawmakers would spend it.

The measure would steer proceeds from a first-in-the-nation wealth tax to a state healthcare fund, giving the governor and lawmakers the power to decide how to spend what California’s nonpartisan legislative analyst estimated would be “tens of billions of dollars.” Backers say it could raise up to $100 billion over five years to keep hospitals and emergency rooms open and preserve insurance coverage for millions of Californians. Yet, community health centers, doctors, and other healthcare entities that might benefit from such a cash infusion argue that the union spearheading the measure has readied a blank check for politicians.

“I’m not sure that you can say, with full security, that this will stop clinics from being closed or healthcare workers from being laid off, or people from losing their healthcare,” said Chris Hoene, executive director of the California Budget & Policy Center, a left-leaning nonprofit.

Your browser does not support the audio element.

Can’t see the audio player? Visit kffhealthnews.org to listen.

Taxing the Ultrarich

Put on the ballot by one of California’s largest healthcare unions, Proposition 40 would impose a one-time 5% tax on roughly 200 Californians with a net worth of at least $1 billion, including most of their stock holdings, yachts, and artwork. It would apply to those who were residents of California on Jan. 1, 2026. Real estate, pensions, and retirement accounts would generally be exempt.

The revenue raised is intended to offset the roughly $30 billion a year in anticipated losses to the Golden State from congressional Republicans’ One Big Beautiful Bill Act. Over the next four years, state and federal funding cuts are projected to nearly double California’s uninsured population, which stands at about 2.4 million people, according to the University of California-Berkeley Labor Center.

Securing additional tax revenue is essential because state lawmakers have yet to come up with a way to pay for healthcare services that will be affected by the cuts, said Dave Regan, president of Service Employees International Union-United Healthcare Workers West, which represents hospital workers and got the wealth tax on the ballot. It would earmark 90% of the tax revenue for healthcare, while the remaining 10% would be split between food assistance and education at lawmakers’ discretion. Regan said such broad categories would give politicians flexibility to be more responsive to the looming cuts.

“Figuring out or predicting exactly what the fallout will be, of where reductions and cuts get made, in a complicated healthcare system, it’s just too difficult to predict,” Regan said.

Among the choices the next governor and lawmakers will face are whether to provide healthcare to people cut off by the new federal Medicaid work requirements, reverse state rollbacks limiting coverage for immigrants with legal status, or raise the low physician reimbursement rates that make some providers reluctant to accept patients enrolled in Medi-Cal, the state’s version of Medicaid.

Lawmakers could also shore up subsidies on Covered California, the state’s health insurance marketplace, whose enrollees have seen their premiums skyrocket after losing millions in federal assistance after Congress last year let enhanced subsides expire.

Most of the money must be spent on health, but healthcare experts said the measure’s ambiguous language could allow lawmakers to use the new billionaire health fund to replace existing state dollars, contrary to the text of the proposition.

“A lot of times these propositions are written in a way to get attention and get support,” said Glenn Melnick, a healthcare economist at the University of Southern California. “But in fact, they can be used for other things later.”

Instead, the healthcare industry is pushing for a long-term funding plan. René Bravo, a pediatrician in San Luis Obispo County and the president of the California Medical Association, worries that a one-time infusion of tax dollars “is going to run out.”

“We need to work on a more sustainable, durable funding mechanism for the Medi-Cal system,” he said.

At the same time, doctors are asking him what will happen when the biggest Medi-Cal eligibility cuts begin to take effect next year. Even if voters approve the ballot measure, the money wouldn’t be available for at least a few months while the state collects the tax. And billionaires could spread their payments over five years.

Californians Divided

Pasadena resident Lynne Wines, a 72-year-old retired banker, knows the state needs the money. But she worries that wealthy investors will see the measure as a precedent and flee the state. Even though the ballot measure is clear that it’s a one-time tax, Wines said it’s a slippery slope.

“Taxes have a way of being needed over and over, and politicians have a way of finding those needs,” Wines said. “So, I don’t really feel secure that this is just a one-time thing.”

She noted that Google co-founder and billionaire Sergey Brin bought a home in Nevada and moved some of his businesses to the Silver State late last year. He is backing ad campaigns opposing the measure. Brin has given more than $100 million to a nonprofit promoting two competing measures, Propositions 41 and 42, designed to blunt or block it, according to contributions filed with the secretary of state’s office. One would count some new state taxes toward California’s overall spending limit and require the state auditor to review new state tax proposals before voters weigh in. The other would prohibit new state taxes on personal property, intellectual property, retirement accounts, and other assets.

GOP gubernatorial candidate Steve Hilton, who has been endorsed by President Donald Trump, warned on CNN in June that just the threat of the tax “has sent trillions of dollars, by some estimates, of wealth leaving the state.” A March study by the conservative Hoover Institution at Stanford University projected that the billionaire tax would cost California $25 billion, citing, in part, the lost revenue from billionaires who have already left the state.

California voters appear torn over departing billionaires. Two independent September polls suggested voter support for Proposition 40 varied from a low of 45% to a high of 52%.

Pasadena resident Steve Erler, 74, works full-time as a building manager because he can’t afford to retire. He worries that federal cuts will hurt children and seniors.

Steve Erler of Pasadena, California, works full-time as a building manager because he can’t afford to retire. He worries that federal cuts will hurt children and seniors, and he supports a California ballot measure that would tax billionaires. (Jackie Fortiér/KFF Health News)

“These people who are making all this money, they can never spend it all. What are they going to do, buy another house in the Hamptons, buy another jet? They don’t need that,” Erler said while out walking his dog in August. “They need to be able to say when they go to bed at night, ‘I helped a child with healthcare. I helped a senior get fed.’ That’s what’s important,” he said.

Democrats are divided — one of many ideological fights playing out nationwide this election cycle as progressives take on more centrist candidates. U.S. Sen. Bernie Sanders (I-Vt.) and the California Democratic Party have endorsed Proposition 40, while Gov. Gavin Newsom, who is exploring a presidential bid, and Democratic gubernatorial nominee Xavier Becerra oppose it while saying that ultrawealthy or high-earning people should pay more. “It’s time for an economic reset, a true minimum tax on billionaires that, well, ensures the people at the very top pay at least the tax rate their own workers pay,” said Newsom, who supports a federal wealth tax, although legislation for a federal wealth tax in Congress has stalled.

If voters approve the ballot measure, political analysts said, it could show other states that taxing the wealthy may help close budget gaps and pay for essential services. Already several Democratic states, including Hawai‘i, Maine, Massachusetts, and Rhode Island, have approved millionaire taxes, but those have been limited to income, not overall wealth. Voters in Washington state will decide this fall whether to keep their millionaire tax.

“I do think this is just the beginning of these proposals nationwide,” said Melnick, the USC healthcare economist.

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

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Kristin Martinelli began her workday at 7:30 a.m. on a recent Monday, completing an online Medicaid recertification form for a client in a nursing home in Austin, Texas.

Next, she drove to meet an 85-year-old and her daughter, who had come in from out of town. The older woman had “pretty advanced dementia” and was scheduled to move into the secure memory care unit of a senior living facility that day, said Martinelli, who works as an aging life care manager with Mir Care Consultants in Central Texas. The three of them had a 9 a.m. meeting with the primary care doctor who would complete the paperwork for the move.

At the meeting, Martinelli explained the situation, and the doctor said he’d fill in the patient’s forms that afternoon. But later in the day, she got a call from a colleague saying that the doctor wouldn’t be able to complete the forms that day after all. That created a scramble because the woman wasn’t safe alone in her house. Martinelli ended up calling a home care agency she trusted. “I begged them to provide me with a caregiver in the next four hours,” she said.

If a combination of appointments, bureaucracy, vigilance, and worry about a vulnerable older person — often interspersed with medical emergencies — sounds familiar, it might help to know about a service its providers ruefully call the best-kept secret in eldercare.

Independent certified professionals like Martinelli used to be known as geriatric care managers. That’s what I called the people who helped my 88-year-old father make the 125-mile move from his apartment to a continuing care community near me, and later helped my disabled sister transition from her home to an assisted living facility.

I also used words like “godsend” and “indispensable.” After the moves, the care managers kept tabs on both my father and sister monthly and eased my fears that something urgent might strike the moment I left on a vacation or a work trip.

About a decade ago, these experts rebranded themselves as aging life care managers. It usually takes a couple of years to become one. Most enter the profession as nurses or social workers; some are physical or occupational therapists or gerontologists. They must attain a required combination of advanced education and supervised experience before they can take the certification exam.

The Aging Life Care Association, the nonprofit that represents these professionals, was founded in the 1980s and has grown to more than 2,000 members, but care managers still have a persistent public awareness problem.

“When we talk to someone, they say, ‘I wish I could have called you six months ago, but I didn’t know you existed,’” said Susy Elder Murphy, who owns Aging Well Eldercare, a large practice serving Washington, D.C., and its Maryland suburbs.

The caller is typically an adult child, the Aging Life Care Association has reported. Martinelli described a common scenario: “Mom is in the hospital, or the children went to visit and hadn’t realized she was so sick. They’re in a crisis.”

Enter the aging life care manager. What distinguishes her (it is usually a woman) from people with confusingly similar names — senior care advisers, patient advocates, care navigators — is her independence.

Aging life care managers work for the client and the family paying them, not for hospitals or insurance companies. Moreover, the association’s extensive code of ethics specifically prohibits “accepting or giving referral fees, fee splitting, kickbacks or other similar arrangements in exchange for client referrals.”

Contrast that with companies that promise free advice on senior living, like A Place for Mom. Care facilities pay A Place for Mom fees for steering new residents their way, as the organization discloses on its website. Advisers for companies that receive fees may be unlikely to recommend places that don’t pay, or to recommend home care, unless the company also contracts with local agencies.

“They’re really marketers, salespeople,” Julie Wagner, chief executive of the Aging Life Care Association, said about the referral companies. Some companies are more transparent than others about these financial incentives.

“If you want to buy a car and you go to the Ford dealer, they will not say, ‘I really see you in a Subaru,’” Murphy said. “You should be talking to someone who’s objective, neutral, and experienced.”

Care managers don’t come cheap. Wagner said association members’ hourly rates range from $150 to $350, with big geographic variations. In Texas, Mir’s standard rate is $185 an hour, billed in 15-minute increments. In Washington, Murphy’s practice charges $210 an hour. Sometimes families share the cost, as my sister and I did. And in some cities, social service agencies provide these specialists on a sliding scale.

Aging life care managers serve as coordinators, not hands-on caregivers, and the range of services they provide is quite broad.

They can, for example: Arrange and oversee a move to or within a senior living facility. Deal with insurers, including Medicare and Medicaid. Drive a client to the dentist. Recommend not only local residential communities and home care agencies but elder law lawyers, medical specialists, therapists, senior move managers, and hospice organizations. Visit weekly or monthly to see that everything is going smoothly. Alert family members if it isn’t.

“A part of our job is mediating between family members, acting as a sounding board,” Martinelli said.

In fact, care managers like Murphy find their clients often seem more willing to listen to them than to their adult children — even if the advice is the same. “Your mom didn’t change our diapers or teach us to talk,” she said. “It’s a different relationship.”

In a 2025 survey of clients and families commissioned by the Aging Life Care Association, “the responses were overwhelmingly positive,” said Jullie Gray, a co-author of the study who teaches at the University of Washington School of Social Work.

The nearly 200 respondents did not constitute a representative national sample, Gray said. But 93% said the benefits of hiring an aging life care manager outweighed the costs, and 99% said they would recommend such a manager to someone else. The survey’s findings were presented at the 2025 meeting of the Gerontological Society of America.

Jeffrey Bernstein, an engineer in Middleton, Massachusetts, has for years relied on Aging Well Eldercare for help with his parents, two older siblings, and an aunt, all in Maryland. Like many people who eventually learn about care managers, “I had no idea such a person existed,” he said, until his wife read about them in a magazine.

Bernstein, 65, was unable to relocate to care for his family directly. But with care managers, “when something came up, they were there, they stepped up,” he said. “More importantly, they knew what to do when I wouldn’t have. It was tremendously helpful for my peace of mind.”

The same was true with Martinelli’s 85-year-old client in Austin. She spent the night with temporary caregivers and moved into her new home in the memory care unit that Tuesday, after her doctor finally produced the necessary documentation. “She went in just before noon,” Martinelli reported. “She had lunch.”

How was the new resident adjusting? “It’s been OK,” Martinelli said, sounding relieved. “So far, so good.”

The New Old Age is produced through a partnership with The New York Times.

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

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

When Carol Daniel, a veteran broadcast journalist who lives near St. Louis, was diagnosed with thyroid cancer in 2022, her husband encouraged her to seek a second opinion. She was worried that consulting another doctor might seem like a betrayal.

Daniel said she wondered: “Am I cheating on him? Am I going behind his back? Am I acting like I don’t trust him by seeking a second opinion?”

Many patients find themselves in this position, but family medicine physician Jen Caudle said patients shouldn’t feel awkward about asking for a second opinion. In fact, in her practice in New Jersey, she encourages people to have open conversations with their care team.

“We shouldn’t be offended,” Caudle said. “We should support you.”

Patients can also think of their primary care provider as the quarterback of their care team, Caudle said, and ask that doctor for help navigating opinions or diagnoses from specialists.

Cara Anthony and Blake Farmer, hosts of the HealthQ series, spoke with Caudle about the sometimes-awkward art of asking for a second opinion.

The QTip:

Your primary care provider can help you navigate first and second opinions from specialists.

Katherine Ruppelt and Emily Siner at Nashville Public Radio contributed to this report.

HealthQ is a health series from reporters Cara Anthony and Blake Farmer, approachable guides to an unapproachable healthcare system. It’s a collaboration between Nashville Public Radio and KFF Health News.

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

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

After the third day of squirting an experimental drug up his nose, Dylan Meetze felt horrible.

“It was like I was underwater, like it took the most to do anything,” he said.

Meetze stopped taking the drug but endured fatigue and anxiety for months afterward, and his eyes and muscles twitched, he said.

He had taken BPC-157, a peptide drug popularized by podcasts about wellness, longevity, and what’s called “body optimization.” “Peptide” is a general term for substances that are smaller than proteins but composed of the same building blocks. Dozens of peptide drugs, including insulin and GLP-1 weight loss medicines, have garnered approval by the Food and Drug Administration. But BPC-157 and many others have not because they haven’t undergone clinical trials.

This fact hasn’t stopped online influencers from promoting them as remedies for muscle injuries, gut issues, covid, and more. Use of BPC-157 is growing in the U.S., particularly among white males, according to a new analysis of millions of de-identified electronic health records. Since 2020, the analysis, which hasn’t yet been published in a peer-reviewed journal, found that more than 1,000 people told doctors they had used the drug.

Meetze said he decided to take BPC-157 after listening to Andrew Huberman, a Stanford neuroscientist with more than 16 million followers on YouTube, Instagram, and TikTok, who talks up peptides frequently on his podcasts. Studies in mice suggest that BPC-157 helps muscles heal and has “very high safety profiles,” Huberman has said, “at least, with respect to the lethal dosing.” His guest on one episode, Craig Koniver, a doctor who sells peptides through his wellness clinic, called BPC-157 “super safe” and recommended it for “anyone who’s working out on a regular basis.” Koniver did not respond to requests for comment.

Huberman didn’t respond to multiple queries from KFF Health News, but an automatic reply linked to a disclaimer on his Huberman Lab website that says the podcast doesn’t constitute medical advice: “Any reliance on information provided through the podcast is solely at the user’s own risk.”

Hoping BPC-157 might help him advance as a weightlifter, Meetze said he bought the drug last year from an online vendor, Researchem. A chemical supply company with that name sells experimental peptides through its website, warning that the substances are “solely for laboratory research” and are “not intended for human consumption.” (It lists an address in Hillsboro, Oregon, that corresponds to a shared office space. A receptionist at the space said Researchem wasn’t registered there, and multiple queries from KFF Health News to the email address listed on the website went unanswered.)

Companies are required to warn that experimental peptides, which haven’t been approved by the FDA, are for research use only. But many companies may soon be permitted to drop the warning because of a push by health secretary Robert F. Kennedy Jr. to lower barriers to their use. He and other leaders of the Make America Healthy Again movement have promoted peptides as a way to improve the country’s health.

On the social media platform X, before he took the helm at the Department of Health and Human Services, Kennedy vowed to end the “aggressive suppression” of “peptides, stem cells, raw milk” and “anything else that advances human health and can’t be patented by Pharma.” (In fact, peptides are heavily patented.)

He has repeated the pledge since taking office. On Joe Rogan’s podcast early this year, Kennedy said he was a “big fan” of peptides and wanted to make many of them “more accessible.” On a podcast with the co-chair of the MAHA Action committee, Gary Brecka, Kennedy said the FDA’s role should be to assess science, “but not tell people and not tell physicians what they can and cannot prescribe.”

“If you want to take an experimental drug,” he added, “you ought to be able to do that.”

This summer, Kennedy’s health department appointed doctors with financial stakes in the peptide industry to a panel that advises the FDA. At an FDA meeting in July, the new appointees voted to ease restrictions on six experimental peptides, including the trendy compounds BPC-157, TB-500, and MOTS-c. Specifically, they advised adding these peptides to a list, called 503A, that would allow specialized pharmacies to make the drugs for human use, even though the FDA hasn’t approved them.

In an email, HHS spokesperson Emily Hilliard wrote that every committee member satisfies the FDA’s ethics requirements. “FDA — not podcasts or politics — determines which substances qualify for inclusion on the 503A Bulks List,” she wrote. The FDA has yet to issue a final decision.

The vote went against FDA scientists who presented research on the six peptides, concluding there wasn’t enough evidence to show they improved any condition. Furthermore, the scientists highlighted a potential for liver damage, allergic reactions, or other serious consequences.

“People are saying this is about medical freedom — putting decisions back in the hands of patients,” said Reshma Ramachandran, a regulatory science researcher at Yale School of Medicine. “But what we see in practice is that incentives aren’t actually centered around patients. They’re centered around selling products.”

Scientists also warned that drugmakers would be reluctant to invest millions of dollars into clinical trials on peptides if they could be sold without FDA approval.

“The chances of clinical trials getting done now are diminished,” said Eric Topol, executive vice president of Scripps Research, a biomedical science institute in San Diego. “We will have more people who are prey to predators that will sell, sell, sell.”

A lack of data leaves consumers in the dark.

Meetze sought help on Reddit, where people post about pain, headaches, vision problems, and a lack of motivation after taking experimental peptides. Peptide enthusiasts often comment on these posts with skepticism, attributing a person’s problems to contaminated products, preexisting conditions, or misuse of the drugs. The online vitriol in the Reddit conversations can be intense, so Meetze welcomed an invitation to join a private group on the social platform Discord in which people with BPC-157 side effects tried to figure out what happened to them and how to fix it.

“There are millions of success stories with these peptides,” Meetze said, “but no one wants to believe that this wrecks some of our lives.”

Experimental peptides are often sold at longevity, wellness, and “performance medicine” clinics — even though they haven’t been proved safe and effective in clinical trials. (Amy Maxmen/KFF Health News)

Wolverines and Migraines

One member of the private side-effects group, a 46-year-old software engineer named Dominik E., said he got an excruciating migraine within days of taking BPC-157 with TB-4, another unapproved peptide — a combination called the “Wolverine Stack” because of its purported ability to heal wounds rapidly, like its namesake Marvel superhero.

“My left eye started throbbing really badly, and the left side of my face became numb,” he told KFF Health News, which agreed to only partially identify him and others interviewed for this article who were concerned about divulging sensitive health information.

After two months of migraines, Dominik said, the pain eased, but his face felt inflamed. “It is a total nightmare,” he said.

“I’m afraid how people will judge me,” said Lois S., a woman who works at a Michigan elementary school. She hoped BPC-157 and another unapproved peptide, retatrutide, would help with weight loss, but she stopped taking the treatment when she felt pain.

“I sought out this substance from a lab that clearly labeled it not for human use, purchased a syringe, and injected this in my kitchen,” she said. “That belies all logic about what a normal person would do.”

Peptide proponents argue that shoddy manufacturing — not the peptides — causes harm. Therefore, they say, the FDA must protect the public by allowing doctors to prescribe peptides made for human use by pharmacies that specialize in compounding medicines. Typically, compounding pharmacies manufacture alternatives to FDA-approved drugs so a patient can, say, get a liquid version of a drug that the original manufacturer makes only as pills.

Adding unapproved peptides to the FDA’s list of compoundable drugs would mark a departure from the list’s purpose, said Peter Lurie, a former FDA official who now directs the advocacy group Center for Science in the Public Interest. He noted that federal and state oversight for compounding pharmacies is often lax, and they’ve been cited for contamination.

Furthermore, he added, the move would mislead consumers into thinking they’re buying drugs backed by clinical trials. People promoting peptides often point to promising laboratory research as evidence. Rats with spinal injuries regained tail mobility after BPC-157 injections, for example, and old mice given the experimental peptide MOTS-c could run longer. On average, however, fewer than 10% of substances that show promise in animal studies prove effective in clinical trials.

“A lot of this pseudoscience stuff sounds deeply impressive — inflammation this and telomere that — but at the end of the day, none of it really matters,” Lurie said. “You’ve got to show clinical benefit in humans: Does it work?”

Peptide promoters lean on anecdotes, often without verifiable numbers. In a podcast recorded at the White House, the MAHA influencer Brecka said: “Twenty million people have been prescribed these things without adverse events.” His guest on the episode, Brigham Buhler — who is the co-author of The Peptide Revolution and owner of a compounding pharmacy that sells peptides and a clinic, Ways2Well, that prescribes them — told Brecka that none of its 75,000-plus patients had reported adverse events from peptides.

Buhler cited even higher numbers in the movie MAHA Uncensored, a documentary featuring Kennedy and other leaders of the MAHA movement and that bears the MAHA trademark. In the segment on peptides, Buhler said: “Having treated literally hundreds of thousands of people through our compounding pharmacy, we’ve never had a major adverse event.”

Topol asks why those boasting success haven’t conducted clinical studies. “If influencers and companies really believe these peptides are helping people,” Topol said, “then they should put their profits back into rigorous research.”

Chris Woodward, a spokesperson for Brecka and his company, the Ultimate Human, said in an email that the health and wellness issues discussed on Brecka’s podcast do not constitute medical advice. “Mr. Brecka consistently advises his audience to consult a licensed physician,” Woodward wrote. Buhler did not respond to requests for comment.

Not all anecdotes are rosy. At an antiaging conference last summer in Las Vegas, two women were rushed to the hospital and intubated after being injected with experimental peptides and vitamins, according to citations that Nevada’s state pharmacy board issued against the doctor running the booth and his colleagues for prescribing and administering drugs without a state medical license.

An FDA database for adverse events contains concerning reports. Although the database can’t prove that a drug, vaccine, or medical device caused harm — the reports are brief, unverified, and voluntary — it signals issues worth exploring. A 36-year-old woman was hospitalized in December after taking the experimental peptide BPC-157 for weight control and a skin disorder, for example, and a 48-year-old man was hospitalized with a “life-threatening” condition after taking the peptide.

FDA scientists presented some of these reports at the July meeting and flagged worrisome outcomes in animal experiments, such as a 2020 study revealing signs of liver toxicity in rats and dogs injected with BPC-157.

Brian Lee, a liver disease specialist at the University of Southern California, was among the panel’s minority who voted against easing restrictions. Without clinical studies, he said, afflictions that take time to develop, like liver damage and cancer, might not be spotted for years: “I think this endorsement can be potentially harmful, and I cannot in good conscience vote ‘yes.’”

The panel’s newcomers disagreed. “I do not believe the FDA made a good case on issues with safety with BPC,” said Kris Wusterhausen, founder of an antiaging company in Texas, the Resurge Clinic, which sells a BPC-157 product for $149.

“Once you’ve seen the effects of BPC,” he said, “you can’t unsee it.”

Awaiting Trial

Deepak Srivastava, president of the Gladstone Institutes in San Francisco, designed a clinical trial two decades ago to see if a peptide he studies, TB-4, could repair tissue after a heart attack. Before enrollment, people volunteering for the study would be screened for early signs of cancer because TB-4 triggers vessel growth and cell migration, which might exacerbate malignant growths. He worries about the FDA panel’s vote to ease restrictions on a derivative of TB-4, before such trials have been completed, saying, “You need to have a healthy respect for the fact that drugs can be harmful.”

Pinchas Cohen, a peptide researcher at the University of Southern California, was less cautious, saying the FDA buzz might drive investors to fund trials. He’s seeking support to bring a peptide his lab identified, MOTS-c, to market. It’s “un-ideal” for people to take unproven drugs, Cohen said, but that’s what’s happening: “The world is changing and people like me need to accept that this is the new reality and find ways to make it as safe as possible.”

In the meantime, people like Meetze resort to podcasts and online forums for advice. His symptoms faded after a year, but he still had spells of feeling “zero emotions.”

Peptide users describe this condition as anhedonia. It’s come up on Huberman’s podcasts.

Huberman occasionally mentions other potential peptide risks, like cancer, sprinkling them into advice on how to take them. Take a 2024 episode with 1.2 million views: “I do not think that BPC-157 is not without its quote-unquote ‘side effects,’” Huberman says. “If you’re going to go down this path of taking BPC-157, I would encourage you to take the minimal effective dose, to not simply do it every day, and certainly to not do it continuously, and of course to monitor your other health metrics for anything that could potentially resemble cancer or tumor growth, because obviously stimulating angiogenesis for wound repair sounds like a great thing, recovering and being able to do your workouts or play your sport, or move about more comfortably, of course, a wonderfully attractive thing to do.”

“Isn’t that what we all want? But obviously not with the trade-off of growing a tumor,” he said, before interrupting the discussion to advertise a supplement company sponsoring the show.

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

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

A cadre of elite techies, financiers, and high-level Trump administration officials have spent a year quietly charting an extraordinary and rapid campaign to persuade Americans to use apps and other artificial intelligence-powered tools to manage their healthcare and medical records.

As that campaign has unfolded, administration officials have granted tech companies an unusual opportunity to nudge the nation’s health department toward a loosely regulated future for AI health apps in which the government reimburses them for services as it does medical professionals.

In February, federal health officials invited those businesses — including tech giants Microsoft, Anthropic, OpenAI, Apple, and Google — to a listening session on conversational AI products for patients, such as chatbots. Representatives from at least 35 industry organizations attended the meeting held by the Food and Drug Administration, which is responsible for regulating health apps as medical devices. Companies were prompted in advance to explain their AI products and how they access patients’ sensitive medical information.

But the meeting did not appear on the FDA’s public calendar or regulatory notices, nor was the public invited. Rather, the invitation for a select group to help shape federal policy governing AI in healthcare was extended in a chat room on the messaging service Slack.

“This is a great opportunity to support HHS’ goals and share your state-of-the-art understanding of safe Conversational AI development and monitoring to help FDA shape future guidance,” CMS senior policy adviser Morgan Taylor wrote in the Slack workspace.

The Centers for Medicare & Medicaid Services has not formally announced the chat room through federal regulatory channels, though CMS officials have talked about it at industry conferences. Legal experts said the chat room resembles a federal advisory panel, which would be required to operate in public view.

KFF Health News reviewed thousands of Slack messages, meeting transcripts, and video recordings that reveal how the Trump administration has granted the industry a direct line to top government officials — including former head of the Department of Government Efficiency Amy Gleason.

The conversation took place behind the scenes as federal health officials publicly worked to integrate AI and other technology into nearly every aspect of healthcare, a plan they’ve branded the “Health Technology Ecosystem.”

“We wanted to give industry a chance to play in the sandbox of government-supported healthcare,” CMS Administrator Mehmet Oz said in September at the public launch of an initiative that allows health apps to bill Medicare for AI services such as wearable device tracking. Last week, Health and Human Services Secretary Robert F. Kennedy Jr. delivered an enthusiastic endorsement of AI in healthcare, claiming it is “much better informed than any doctor in the country.”

Meanwhile, HHS staff even promised that a recently launched Medicare App Library would serve as a lucrative pipeline for those businesses to get new users. The library’s webpage currently promotes only two dozen commercial apps to millions of American seniors and those with disabilities.

As Trump officials sell it, Americans will get easier access to their medical records so apps can swiftly provide health or wellness advice. In practice, however, so will the tech companies.

Doctors, meanwhile, are increasingly worried about how patients use and share their medical records with the nascent technology.

“Some of these tools just aren’t ready for primetime,” said John Whyte, CEO of the American Medical Association. “We don’t have enough data about them. We don’t understand how they work, how they’re using the information. There’s no liability if these tools get things wrong.”

CMS officials declined to answer several questions about the Slack workspace, including about its legality.

“CMS is focused on giving Medicare beneficiaries greater access to their health information and useful digital tools while promoting an open, interoperable healthcare system,” Gleason, now chief product officer for the newly created Office of Health Technology and Products at CMS, wrote in an emailed statement. “The Health Technology Ecosystem is an open, voluntary technical collaboration. CMS will continue working with patients, providers, payers, technology organizations, and other stakeholders to make health information more accessible and useful to the Americans it serves.”

The FDA did not respond to a request for comment.

The Conversation Begins

The behind-the-scenes effort to funnel more Americans to AI-powered health apps began in August 2025 in the Slack workspace.

“Welcome all!” Gleason wrote. “Please be sure to read the Code of Conduct and see the Channel list as well to help you find channels that are relevant to you.”

Gleason is best known for serving as the acting administrator of Elon Musk’s Department of Government Efficiency, as it gained access to millions of Americans’ sensitive personal and financial data, including at the Social Security Administration.

As her work with DOGE wound down last year, Gleason welcomed a variety of tech leaders, investors, and entrepreneurs to the chat room.

The Slack workspace’s participants include representatives from major digital wellness companies like Oura Health, AI companies like Palantir, and investment outfits like 8VC, a venture capital firm associated with Kennedy’s son Finn. While the Slack’s member count has ballooned to 1,700 over the past year, only a handful of patient advocates, doctors, and hospital representatives are in it.

The code of conduct Gleason shared on Slack in August 2025 documented that CMS had quietly established a technology working group.

Documents have been reproduced from the CMS Health Tech Ecosystem Slack and highlighted by KFF Health News.

The document also set ground rules for the Slack workspace, noting that the group does not constitute an “advisory committee,” nor would it be used “to obtain advice or recommendations for HHS, CMS, or any HHS/CMS officials.” The code also advises that federal employees “are prohibited from endorsing any product, service, or enterprise.”

Joseph Daval, a former FDA lawyer who is now a research specialist at Harvard Medical School, reviewed messages from the Slack workspace at the request of KFF Health News. He said the chat room in some ways resembles a federal advisory committee — an independent panel that can be formally stood up by an agency head, Congress, or the president to ensure agencies act in the best interest of the public rather than industry.

The law on advisory committees “was passed in part out of a concern about interest group capture, about anticompetitive capture of agency policymaking, about corruption,” he said.

Daval said the chat group looks like a committee, with members interacting with one another and building consensus on preferred courses of action.

If it were a formal advisory committee, though, Daval said, it would be subject to certain “membership requirements having to do with independence and fair balance.”

A ‘Sales Engine’

Over a series of video calls, CMS officials promised tech leaders participating in the Slack workspace that the agency would promote their health apps.

Jacob Shiff, the chief AI and technology officer at CMS’ Innovation Center, told industry representatives in a Zoom meeting in February that he hoped the agency’s work would be a “sales engine” for the health apps.

“We’re going to have a directory of all the organizations,” Shiff said in a video recording reviewed by KFF Health News. “The people on this call who hopefully will have amazing solutions that work will be the winners, and you have every incentive to obviously drive down your costs so you can be extremely profitable and scale. So hopefully we’re selling — or enabling you guys to thrive.”

A recording of the call had been publicly available through a Google Drive link but was made private the day after KFF Health News asked about comments made during the meeting.

CMS did not respond to queries about how the agency has decided which AI-powered health apps appear in the Medicare App Library or why federal employees have promised to promote the products.

Days before publicly launching the Medicare App Library, CMS officials promised AI tech leaders during an informal meeting that the new webpage would become an important distribution channel for health apps because Medicare enrollees would place trust in products listed on the CMS website.

“If medicare.gov is promoting it, for lack of a better word, then yeah, it would be an app that I would trust and explore,” CMS’ Taylor said during the April 7 meeting, channeling enrollees, according to a transcript of the call.

The Medicare App Library’s webpage encourages older and disabled Americans to manage health conditions such as obesity, cancer, or diabetes using two dozen AI-driven apps developed by some of the world’s largest corporations, including Microsoft and Google. Many of the apps promise in their product descriptions to give insight, perform analyses, or develop plans that will help patients lose weight or manage diabetes.

CMS officials have suggested to tech representatives during at least two meetings this year that those apps will be prioritized for a new agency program that reimburses companies for AI chatbot advice or wearable device tracking, according to video recordings.

CMS has not publicly divulged all the criteria it uses to decide which apps are listed in its library, but the webpage promotes apps still in their infancy.

Among them is Slothwise, a health app launched this year from a San Francisco apartment by a young, self-described biotech entrepreneur and triple citizen of Russia, Israel, and the U.S. The app says it “knows your whole health” by analyzing medical records and tracking health data for $9.99 a month. It has been reviewed on the Apple and Google app stores only a handful of times.

“I trusted slothwise with my health info because it was endorsed by medicare,” one reviewer wrote in a Google review in August. “Connecting info was smooth and I learned a lot about my health.”

In a statement, Slothwise CEO Sofia Sigal-Passeck did not answer questions about the size and medical expertise of her current team, nor about the availability of a doctor to consult with patients who use the app. The app, she said, is only “informational” at this time.

“I’ve spent years building at the intersection of AI and complex biological data,” Sigal-Passeck wrote in an email. “A small team is not the same thing as an inexperienced team. Slothwise is built by physicians, PhD researchers and engineers.”

‘No Regulation, No Rulemaking’

What’s often less clear — and buried deep in lengthy privacy policies — is that these apps are tapping into the intimate details of patients’ medical records to fuel their AI-driven analyses.

Tech vendors have lobbied the government to treat these apps, once they are vetted and authorized by a third-party organization, like a patient requesting records. That position gives apps sweeping access to pull sensitive health data from the national network through which providers electronically exchange medical records, called the Trusted Exchange Framework and Common Agreement, or TEFCA.

A small but influential group of those tech company executives directly made the case to federal health officials during a formal meeting in May, arguing that when health apps request medical records they should be treated as if they are standing “in the shoes” of a patient.

On Slack, tech vendors have lobbied for a “frictionless pathway” for verified users, after they’ve consented once, that allows the app to gain limitless access to patients’ medical records from the TEFCA network.

Ryan Howells, a healthcare management consultant who lobbies for a Washington, D.C.-based digital health tech organization called the CARIN Alliance, has spearheaded an effort for patients — vis-à-vis apps — to more easily access medical records. He has regularly noted in Slack that health apps accessing TEFCA must be vetted by a third-party organization — one of which he sits on the board of — and agree to a code of conduct, developed by the alliance he lobbies for.

“What more can you do to have trust in these apps?” he wrote in a March Slack message, responding to concerns about how much patient consent is needed for apps to access medical records on the network.

Kristen Valdes, the CEO of b.well, a company that also connects apps to the TEFCA network, made a similar argument.

“My opinion is that we need to stop protecting patients from themselves,” she wrote in the same message thread. “Full stop.”

Howells did not respond to an emailed list of questions from KFF Health News. In an interview, Valdes told KFF Health News that her comment reflected her frustration at the “paternalism” of the healthcare system, which she said has historically made it difficult for patients to access their records. Although, she said, “there are going to be good and bad apps.”

Other tech leaders worried in Slack about the approach.

One startup founder cautioned the group to think about the pitfalls of giving health apps broad leeway to pull medical records.

“We might all be good, honest actors here but security & privacy systems have to be designed around the presence of malicious actors – especially if we want this system to scale up to thousands of apps,” wrote Jason Kulatunga, who runs Fasten Health, a medical records management platform.

Gleason, the CMS official, has publicly championed the vision shared by Howells and Valdes. In her speeches, she frequently urges doctors to accept patient medical records directly from apps and calls on them to “Kill the Clipboard,” also the title of a 2025 white paper co-authored by Howells that urges doctors’ offices to abandon paper records.

Last month, Gleason spoke to a crowd gathered at a swanky hotel in Washington for an event hosted by the MAHA Institute, a think tank that supports Secretary Kennedy’s agenda. She laid out her work with tech companies over the past year as she discussed the Trump administration’s efforts to make medical records more digitally accessible.

As she told it, more Americans can now download an app and access their medical records.

“Once you’ve verified your identity you can just click a simple button and say, I’d like my medical records into whatever app I choose,” Gleason said.

She continued: “That was all done just — no regulation, no rulemaking — just by challenging industry to work together.”

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

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

LOS ANGELES — Every Tuesday, Naman Shah sees tuberculosis patients at a small public clinic in Los Angeles’ San Fernando Valley. Shah, a physician and epidemiologist at the Los Angeles County Department of Public Health, pores over images of battered lungs, listens to labored breathing, and checks medications.

It’s part of an initiative dating to the early 20th century to control infections so tuberculosis doesn’t spread. “We like doing things upstream,” Shah said, “meaning before they happen, not after the damage is done.”

Today, Shah and his colleagues are applying the same principle to medical debt. A key part of that effort is a new system to allow every hospital in Los Angeles County to easily screen patients for financial aid. The goal: to stop low-income families from getting a bill that buries them in debt.

Shah estimates this system could prevent several hundred million dollars of medical debt every year.

Vicious Cycle

Nationwide, an estimated 100 million adults have some form of healthcare debt. In Los Angeles County, the nation’s most populous, public health officials calculate that about 800,000 residents have medical bills they can’t pay.

“The impacts of medical debt were staggering,” said Shah, who used to staff a rural health clinic in India and, since 2023, has led a county initiative in Los Angeles to tackle the debt problem.

“People end up with credit card debt and then a vicious cycle of high interest rates and poverty,” he said. “People forgo their prescriptions. People forgo appointments. And then you get into worse health.”

Hospitals typically offer financial aid to patients with low incomes. But information about assistance is often hard for patients to get. Applying can be cumbersome. And many eligible patients never seek aid, research shows.

“Most people walk into the hospital and walk out without any knowledge of financial assistance,” said Jared Walker, founder of Dollar For, a nonprofit that helps patients nationwide apply for aid, often called charity care.

That’s fueling debt. It’s also driving costly collection efforts that even hospital officials acknowledge pointlessly target low-income patients who are unlikely to be able to pay.

“They’re turning their wheels trying to collect on debt that isn’t collectable,” said Adena Tessler, regional vice president for the Hospital Association of Southern California.

Naman Shah examines a patient at Monrovia Health Center, a Los Angeles County public health clinic in Monrovia, California. Shah says reducing medical debt in the community will depend on effective prevention strategies, just as stopping the spread of infectious disease does. (Lauren Justice for KFF Health News and Tradeoffs)   (Lauren Justice for KFF Health News and Tradeoffs)   (Lauren Justice for KFF Health News and Tradeoffs)

Presumptive Eligibility

One potential solution is a system that automatically screens and qualifies low-income patients for financial aid without requiring an application. This is called presumptive eligibility.

Some hospitals already use such systems, which rely on software that checks patient eligibility based on publicly available information such as credit history.

The strategy can be very effective. Shah said hospitals that have deployed presumptive eligibility systems have reported as much as a 50% increase in the amount of financial aid they give patients.

Under a state law passed last year, all California hospitals will have to start doing presumptive eligibility screening by next July.

But the systems can be expensive and difficult for smaller hospitals to implement. Only about 1 in 5 hospitals in Los Angeles County currently use them, Shah said.

Public health officials wondered if they could help more hospitals set them up.

The county, which, like many local governments, faces major fiscal challenges, couldn’t pay for this, Shah said. But the public health department could bring together healthcare and hospital officials in the county to figure out another solution.

“The beauty of government is not when it always has to do the work,” Shah said. “We have the ability to make sure that people cooperate.”

The Hospital Association of Southern California, initially wary of the county initiative, came to see improving hospital financial aid programs as beneficial to hospitals, many of which were wasting money on collections. “The billing process is cumbersome and costly,” said Paul Young, a senior vice president with the association.

The association agreed to procure a presumptive eligibility system and make it available to its members. This bulk-purchasing approach, which Young compared to “a Costco model,” would lower the cost for individual hospitals, he said.

At the same time, L.A. Care, a nonprofit health plan that administers Medicaid coverage for more than 2.5 million low-income county residents, committed $2 million to set up the system.

The investment reflected the safety net insurer’s mission to make medical care accessible to more people, said Melanie Fontes Rainer, who leads strategic planning for L.A. Care. “It’s going to make Los Angeles County better,” she said.

Making It Work

Getting the new system up and running by January, as the partners hope, faces challenges.

Hospital officials are figuring out how the system will be funded in the long term. And it’s unclear how many of the county’s 88 acute care hospitals will ultimately use it, even if it’s cheaper and easier to access.

The partners are also working to improve data that the system relies on to screen patients. One goal is to link the system to tax records maintained by the state of California. This would provide hospitals with more accurate information on patients’ income than current systems, which often rely on estimated income.

Walker, the patient advocate at Dollar For, said he’s heartened by the county’s effort. “I’m optimistic that we can make a better charity care system,” he said. “And the fact that hospitals in Los Angeles County are willing to be innovative and creative about ways we can do that is super encouraging.”

For his part, Shah said county public health officials recognize that a better screening system at hospitals won’t by itself eliminate medical debt. But he said the public health department couldn’t ignore a problem that affects more county residents than asthma or tobacco use.

“Prevention is our bread and butter,” he said.

“The impacts of medical debt were staggering,” says Naman Shah, who since 2023 has led a Los Angeles County initiative to tackle the debt problem. (Lauren Justice for KFF Health News and Tradeoffs)

This article is part of “Hidden Help,” an investigative series from Tradeoffs and KFF Health News about how hospitals can protect their patients from the life-altering harms of medical debt.

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

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

On Sept. 30, I was one of the seven media witnesses who observed Tennessee fail to execute convicted murderer Christa Pike, the first woman to face the death penalty in the state in almost 200 years.

From our previous reporting, each of us had an inkling that the lethal injection process might not go according to plan. Pike’s attorneys had asked the Tennessee Supreme Court to allow her to be hanged instead, citing concerns that a platelet disorder and small veins would make the actual injection not only painful but ineffective.

And Tennessee had already botched an execution attempt in May, when healthcare workers failed to establish complete IV access into Tony Carruthers, who was sentenced to death after being convicted for his involvement in the kidnapping and murders of three people in 1994.

Tennessee Gov. Bill Lee said after the failed execution of Carruthers, who has maintained he is innocent, that the state wouldn’t try again to kill him for at least a year. After Pike left the execution chamber in an ambulance on Sept. 30, Lee announced he would suspend lethal injections for the rest of the year.

The morning of Pike’s scheduled execution, I and the other media witnesses arrived at the Riverbend Maximum Security Institution in Nashville by 8:30 a.m. and waited to be ushered into the prison with nothing but our driver’s licenses in hand. The plan was to wait inside until Pike began her journey to the death chamber at 10 a.m.

But we didn’t make it that far.

Before the Department of Correction’s staffers began moving us away from the outdoor media tent and our belongings, the reporters’ phones all went off. A federal circuit court had stayed the execution. This was my fifth stint as a media witness to an execution, and I’d never seen a stay issued. We didn’t know what that would mean.

It turned out to mean waiting for nine hours at the prison, barred from leaving the grounds. We spent most of it in the boardroom where parole hearings take place.

Hours of Waiting. Then, ‘It’s a Go.’

Throughout the wait, the victim’s family often came up in conversation. In 1995, Pike, then 18 years old, killed Colleen Slemmer, who was 19. Slemmer’s family in Florida traveled to Tennessee for the execution with money raised through crowdfunding. It’s unclear where they waited while the last-minute legal wrangling played out.

Sometime around 6 p.m., the prison system’s communications director, Dorinda Carter, told us: “It’s a go.”

Tennessee had asked the U.S. Supreme Court to lift the stay, and it did. Carter read the ruling aloud to us.

For unknown reasons, it took another hour or so for the security team to usher us into the witness bay, an all-white cinder block room with black pleather chairs in two rows and a big window overlooking the death chamber. A loudspeaker pipes sound into the room from the chamber when the microphones are on.

A black curtain hangs in front of the window inside the death chamber. Department of Correction workers open it once IV lines are inserted into the condemned prisoner.

The curtain is there to obscure the workers who place the IVs, in order to shield their identities as required by state law. That process is enshrined in the “Lethal Injection Execution Protocol,” which is the guidebook the Department of Correction writes for itself. There is no other regulation over executions in the state.

My employer, the Nashville public radio station WPLN, is a party in a lawsuit challenging the state’s concealment of the IV insertion. When executions are botched, it’s often due to something going wrong while IVs are placed — or with the subsequent step if IVs fail, placing a central line in a deeper vein through the chest, neck, or groin.

A lower court ruled in favor of WPLN and other media plaintiffs in January, but the state appealed the order, and it has been halted while higher courts consider the case.

The Death Chamber

The American Medical Association officially bars doctors from participating in executions, and many other health professionals also consider assisting an execution to be unethical.

Outside of prison staffers and the execution team, only the prisoner’s spiritual adviser and attorney are allowed in the room with the prisoner while the IVs are inserted. So generally, attorneys’ descriptions are the only account of the procedure.

Under normal circumstances, witnesses sit in the bay for 10 or 15 minutes with the curtain closed. That’s how long it tends to take for the IV team to place a line and start running saline, to prepare for the 5 grams of the sedative pentobarbital that will be pumped in to kill the prisoner.

Once the lines are set, the execution team enters an adjacent, concealed room. The IV lines run through the wall into that hidden chamber, from which the drugs are administered.

But at Pike’s execution, we sat in the bay for 45 minutes with the curtain closed and the microphone turned off.

Until Carruthers’ failed execution, the Department of Correction kept the lights off in the witness bay during the wait. Witnesses at his execution said they sat in a dark room for an hour and a half as the execution team tried and failed to place an IV line. This time, the prison kept the lights on.

The clock we use to give a minute-by-minute account is in the death chamber, so we can’t see it with the curtain closed. John North, a reporter with the television station WBIR in Knoxville, was the only witness wearing a watch. The rest of us asked him over and over what time it was.

After half an hour, it was clear the IV team must have been struggling.

We wondered whether Pike’s execution would unfold similarly to Carruthers’. That time, the governor called and ordered the execution halted before the curtain ever opened.

But at 7:27 p.m., we heard the curtain being drawn away.

We saw Pike in profile, lying on the gurney, facing the window for the other bay, where the victim’s family and prosecutors sit.

We saw Pike’s spiritual adviser, Mikey Noechel, who wore a wine-red sash over his suit. Together, they sang and talked about Buddhist teachings. 

Under the state’s protocol, the spiritual adviser is allowed in the death chamber as the pentobarbital flow begins, though the attorneys are not.

There is no signal when the lethal drugs start flowing, but it’s assumed to begin after the prisoner delivers her final words. It’s typical for the spiritual adviser to offer prayers and other support, and for there to be a back-and-forth between the two.

Pike spoke.

“I just want to say that I’m going to leave this world the way I’ve spent most of my life, and that is with love,” she said.

She said that she had love for those who hate her, and that she was at peace with her death.

Moments later, Pike told Noechel her arm was burning. She said it was in one specific spot and asked corrections staff in the room whether that was normal.

Pentobarbital is alkaline, so it burns like drain cleaner if it touches skin. If the IV is administered correctly, that is unlikely to happen.

But Pike and Noechel chatted for what seemed a shocking amount of time. Prisoners tend to show signs of being sedated a few minutes in. Pike didn’t.

Something Is Wrong

The Tennessee Department of Correction uses an odd practice to announce the drugs have been fully administered. There’s a small, hinged door built into the wall between the concealed drug management room and the death chamber, with a platform beneath it. Once the drugs have completely flowed through the IV, the door is opened and a rock is placed on the platform. That initiates a five-minute waiting period, after which the curtain closes again to obscure a doctor, who enters the death chamber, checks the prisoner’s pulse, and certifies the death.

In each of the executions I’ve witnessed, the prisoners look unconscious long before the rock comes out, and in the minutes following they’re presumed dead.

The rock came out at 7:41 p.m. At 7:44 p.m., Pike was still speaking quietly to Noechel.

My jaw dropped. It was clear to me then that something was very wrong.

Once the five minutes are up and the curtain closes to conceal the doctor, who confirms the time of death, the spiritual adviser moves into the witness bay and stays there until everyone leaves the facility.

But after Noechel entered the witness bay, staff came in and ordered him back into the death chamber. There was only one reason to do so: They were trying again.

The curtain reopened.

The state’s protocol dictates that, as a backup plan, prison staff can run a second round of pentobarbital. According to a statement from the Death Penalty Information Center, which tracks execution attempts and their outcomes, Pike is “the first person to survive after being injected with lethal doses of execution drugs.”

Eventually, Pike stopped talking. She started snoring.

She continued to snore after the rock was put out the second time and the curtain closed again. We continued to hear her snore over the loudspeaker.

The state’s protocol does not contemplate a second round of drugs failing to kill the prisoner, so there are essentially no rules for the situation the Department of Correction found itself in with Pike.

It’s unclear what was happening behind the curtain. Her lawyers later said they weren’t allowed in the death chamber.

The curtain closed at 8:16 p.m., and we listened to Pike’s snoring for nearly 40 minutes.

Tensions rose between the media witnesses and Carter, the Department of Correction’s communications director. I asked her: “Do they do a third round? Are you going to resuscitate her?” Carter didn’t have an answer. Another witness, Steven Hale of the Nashville Banner, asked why the curtain was closed. The doctor wasn’t certifying Pike’s death. We could all hear her breathing.

At 8:53 p.m., the prison warden, Kenneth Nelsen, came over the loudspeaker and said, “Media witnesses, please exit the area.”

‘Intubated, on a Ventilator’

We went out to the news conference, which the Department of Correction usually requires media witnesses to participate in. While one of us was speaking, several emergency vehicles arrived. We saw the caravan leave with its sirens on. That was our only insight into whether Pike was alive.

Pike’s attorneys later confirmed she was hospitalized. As of Oct. 1 she remained in critical condition at an undisclosed Nashville hospital, according to her attorneys.

Her lawyers, in an emergency filing with the Davidson County Chancery Court on Oct. 2, alleged that the execution team apparently didn’t “realize that the IV lines were not correctly placed or that the veins had blown” and that pentobarbital had “in whole or in part” entered her body instead of her veins.

Pike arrived at the hospital with both of her arms “swollen, burned, and blistered,” they wrote. “She is intubated, on a ventilator, and remains unconscious.”

Pike’s future, as well as that of lethal injection in Tennessee, is uncertain.

Lee, the Republican governor who has paused executions for the rest of the year, leaves office in January. The front-runner in the Nov. 3 election to replace him, U.S. Sen. Marsha Blackburn, has been a vocal supporter of the death penalty. After Pike’s failed execution, the Republican candidate posted her solution to X.

“Bring back the electric chair and deliver justice for these victims swiftly,” she wrote. “As your governor, I will do just that.”

The electric chair was last used in the U.S. in Nashville when Tennessee executed Nicholas Sutton in 2020. He was one of five prisoners who chose the electric chair over lethal injection in the state from 2018 to 2020.

This article is from a partnership that includes WPLN, NPR, and KFF Health News.

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

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

(Maria Fabrizio for WPLN and KFF Health News)

When Lori Baute first learned about precautionary full-body MRI scans, she dismissed the idea.

“ I heard Kim Kardashian got one, and some other wealthy people,” Baute said. But at 59, she was worried about her long-term health. She has a family history of cancer, and she’s a critical caregiver for her aging mom and her adult brother with special needs.

After a close friend was diagnosed with bladder cancer, Baute decided to make an appointment with a clinic that offers full-body scans near where she lives in Ocala, Florida. Her results came back a week later. One major finding: She has lesions on her pancreas. “When I got that, I was really petrified,” she said.

Worried about pancreatic cancer, Baute shared the results with her gastroenterologist, who ordered a targeted MRI scan as a follow-up. That test showed the lesions were benign cysts.

Baute’s experience is becoming more common as companies pitch body scans directly to consumers as a way to detect cancer and other diseases early. But no major medical association — including the American Cancer Society and the American College of Radiology — recommends these scans for people without a very high risk of certain cancers.

And even medical screenings that doctors do recommend can carry some of the same reasons for caution.

The QTip:

Before saying yes to the test, ask about the risks and benefits — even if your doctor recommends it.

Here’s what to know:

1. Every Test Comes With Costs and Risks

At a minimum, a medical test will cost you time — and could mean a hefty medical bill. Many tests marketed directly to consumers, like full-body scans and at-home blood screening kits, are not covered by insurance, and some tests can cost several thousand dollars.

Some laboratory tests might involve only the discomfort of a blood draw or the awkwardness of collecting a urine or stool sample, but others carry the possibility of physical harm. For example, a small percentage of people who get CT scans each year will develop cancer because of the radiation exposure from the tests, according to estimates from the National Institutes of Health. Relatively simple procedures like a biopsy or an endoscopy come with the risks of pain, infections, tearing, a reaction to anesthesia, or further serious complications.

Plus, testing can cause anxiety and stress — as patients wait for results and if the results are inconclusive. “I see patients every week in my office who are tortured by the results of tests that they really didn’t need to ever have,” said Rita Redberg, a University of California-San Francisco professor and cardiologist and an advocate for less medical testing. For example, if you discover a cyst, then “you’re living for the next year, two years, three years getting repeated tests to figure out whether it’s benign or a cancer,” Redberg said. She cautions patients against testing unless they have specific symptoms.

2. Testing Often Leads to More Testing — And More Risk

A reality of getting a medical test is that the results often lead to additional, and potentially more invasive, testing. Doctors call this “diagnostic cascade.”

Baute, for example, plans to continue monitoring her pancreas with annual scans. To her, she said, the financial cost and anxiety are worth it if she can feel “like I’m in control of my health and I have knowledge.”

But Redberg points to a worst-case scenario, documented by JAMA Internal Medicine in 2011: After starting an exercise program, a 52-year-old woman experienced chest pain and went to see her doctor. Her exam suggested that her pain was muscular and she had a low risk for heart disease. Still, her doctor ordered a scan of her heart to reassure her. The results led her doctor to order another test, during which her artery was ripped. She had emergency bypass surgery, experienced complications, and ultimately, Redberg said, “she ended up with a heart transplant — all from this unnecessary scan just to reassure her.”

3. A Few Simple Questions Can Help You Decide

Before saying yes to the test, it’s important to know about the risks and benefits — even if your doctor recommends it, Redberg said. She suggests asking a medical provider and yourself questions like:

• What am I going to learn from this test?
• How is this test going to help in my care?
• Could I improve my health without doing this test?

She said many test results, especially in her field of cardiology, end up pointing patients back to the basics of a healthy lifestyle, like eating well, exercising, and not smoking. And those, she said, could be advised without a test.

People and Policy

If your health insurance covers a medical test, that means the test has most likely met vetted, scientific standards that demonstrate benefits to patients. Insurers must cover evidence-based services that have a rating of A or B from the U.S. Preventive Services Task Force. Private insurers, as well as Medicaid and Medicare plans, must cover the full cost of recommended preventive screenings. Many medical tests marketed directly to consumers are not covered by insurance.

Emily Siner at Nashville Public Radio contributed to this report.

HealthQ is a health series from reporters Cara Anthony and Blake Farmer, approachable guides to an unapproachable healthcare system. It’s a collaboration between Nashville Public Radio and KFF Health News.

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

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

By Oct. 1, at least 2 million seniors will have received alarming notices: Their health plans — which they get through Medicare Advantage, the version of Medicare run by private health insurance companies — will disappear at the end of the year.

Many will be stuck without a lot of options. In some cases, no other companies in their area may offer Medicare Advantage plans to replace them. This isn’t the first time this has happened. Last year, almost 3 million seniors found themselves in similar situations.

An Arm and a Leg host Dan Weissmann and producer Emily Pisacreta looked into what happened when those cancellations hit Minnesota. The collapse of a major Medicare Advantage carrier there led to “total chaos,” according to the director of the state’s Medicare assistance agency. Everyday people stepped up to help one another in the fallout.

Plus, KFF Health News senior correspondent Julie Appleby joins to discuss the role of private health insurance companies in Medicare. She explains how these companies shape seniors’ choices, including in Medicare supplemental plans, whose premiums have skyrocketed.

Dan Weissmann @danweissmann @danweissmann.bsky.social Host and producer of "An Arm and a Leg." Previously, Dan was a staff reporter for Marketplace and Chicago's WBEZ. His work also appears on "All Things Considered," Marketplace, the BBC, "99% Invisible," and "Reveal," from the Center for Investigative Reporting. Credits Emily Pisacreta Producer Adam Raymonda Audio wizard Ellen Weiss Editor Click to open the Transcript Transcript: Medicare Is More Broken Than We Thought

Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.

Please note that this transcript may include errors.

Dan: Hey there. In the first week of October last year, 2025 — a whole bunch of senior citizens in Minnesota got a letter with some bad news. 

Amy Hockert: A lot of changes coming in 2026. We know that at minimum 160,000 of you, absolutely have to pay attention to this,

Dan: Their health insurance through Medicare Advantage was going away. 

Erin: I was so mad. I was like, “No. Now what do I do?” And I look at my husband and said, “Now what?” “

Dan: Folks like Erin– who lives in small-town Cambridge,Minnesota–  were going to have to find a new plan by the end of Medicare’s annual open enrollment period, which would start in a couple weeks.

Up until now, Erin had been on a plan from a local nonprofit insurance outfit called U Care.

UCare offered some of the most generous and affordable plans in Medicare Advantage — the version of Medicare operated by private health insurance companies. 

But U Care was going belly up.

FOX 9: The collapse of UCare after 40 years in Minnesota has been swift and stunning.

Dan: Callers jammed the phonelines at Minnesota’s Aging Pathways hotline — thats the state agency that helps people with Medicare. Kelli Jo Greiner runs it.

Kelli Jo Greiner: I don’t know any other way to describe it other than total chaos. Our phones were ringing off the hook.

Dan: Meanwhile, in the Twin Cities suburb of Maple Grove, an insurance broker named Alison Ebert had been getting ready for her busy season, making appointments with her usual clients.

Alison Ebert: October 1st through October 14th, I always set my appointments with my clients. I always joke I get paid in cookies and coffee because I go to their homes, we sit down. I know their families, I know their kids, their grandkids

Dan: The day open enrollment started, she got 47 calls — from people she’d never met. People whose coffee and cookies she’d never tasted.  That was new. 

And more would call. Because more letters were starting to go out.

Not just from U Care. Other health insurance carriers were dropping out of the area. UnitedHealthcare, BlueCross, Aetna, Humana — all canceled Medicare Advantage plans in counties all over the state. Three counties were left with no Medicare Advantage plans at all. 

And… this wasn’t just something that was just happening in Minnesota. Almost 3 million seniors across the country had plans in 2025 that would stop being offered to them in 2026.

And that’s because at their headquarters, insurance companies had done their calculations, assessed their risks, and decided that offering plans to those people would no longer be profitable enough. So, seniors from Maine to California saw the number of available Medicare Advantage plans shrink by the dozen — leaving a lot of them confused, and with fewer, often worse and more costly health insurance options. 

It’s part of a big new trend — these disappearing acts  have been increasing in recent years, and insurance companies have already signaled that more are coming. Major insurers have already announced intentions to dump plans that currently cover more than two million seniors. 

We’ve spoken with folks in a dozen states — in rural places like Vermont and North Dakota, and in states with rural and urban centers like Maryland and Minnesota — about how it all went down last year — and what we can take away for this year.

My colleague Emily Pisacreta and our awesome summer intern Lynn Barbera made those calls. And Emily, you called that experience “eye opening.” 

Emily: Uh, yeah. We already knew from previous reporting that people had problems with Medicare Advantage. At first this story sort of seemed like one more thing people on Medicare Advantage had to worry about. But it turns out to be more than that. What happened last year — and is about to happen again this fall — showed us big problems, problems that affect everyone who’s on Medicare — or hopes to be one day. There are layers to this. 

Dan: And we’re gonna peel them back. Get ready for a big dose of Medicare.

This is An Arm and a Leg, a show about why health care costs so freaking much and what we can maybe do about it. I’m Dan Weissmann, I’m a reporter and I like a challenge. So our job on this show is to take one of the most enraging, terrifying, depressing parts of American life and to bring you a show that’s entertaining, empowering and useful.

Emily, a while back, we looked at problems with Medicare Advantage. How about we do a little recap?

Emily: Yeah. 

Dan: We were taking our first deep look at Medicare itself, and as we said then, it kind of blew our minds. 

Emily: Before we did that story, I was under the impression that you wake up on your 65th birthday and never have to pay a medical bill again, never have to deal with health insurance companies again. In fact, that’s the dream of Medicare For All. 

Dan: But it’s not the reality of Medicare as it exists. For one thing, signing up means making a dizzying number of choices. 

And you basically never escape private insurance companies. No way. Turns out, they run a lot of Medicare — so you could see dozens of different plans offered by different companies. 

But here’s the most important part: You have to choose between what’s now called Traditional Medicare — run by the U.S. Government — and Medicare Advantage plans, run by private insurance companies. 

And they both have downsides. 

Traditional medicare doesn’t cover everything. For outpatient medical care — for doctor visits, outpatient procedures, infusions, physical therapy, X-rays and MRIs, you name it — Medicare only pays 80 percent of the bill.  

And those other things can get so expensive — the remaining 20 percent can run to thousands of dollars that most seniors don’t have. 

If you want that covered — and, I mean, you do — you actually have to buy a “supplemental” policy — people call them “Medigap” plans. They’re offered by private insurance companies. And you pay a premium. 

Oh, and did I mention that you’re already paying a premium to the feds for your Medicare? Yep. Exactly how much depends on your financial situation, but most people pay just over 200 bucks a month.

Medigap premiums – to the private companies – are on top of that. They vary a lot — by what plan you pick, and by where you live — but the average is another two-hundred and some every month. And that number goes up every year. 

So you’re paying all that but then you’ve still got another gap. Vision, dental, and hearing. Traditional Medicare doesn’t cover them at all. So Medigap plans generally don’t cover them either. 

The dark joke is that eyes, ears and teeth are “luxury organs”

Because who needs to see or hear or chew? 

So those are some BIG gaps.

A lot of Medicare Advantage plans offer to fill those gaps:

MA Ad 2: This card I’m holding in my hand, it’s an example of an all-in-one Medicare Advantage membership card.

Dan: Lots of them include what’s missing  

Woman in Ad2: That card helps me with my vision costs, my dental costs.

Dan: Some of them even subsidize the premium you’d be paying to the feds, even bringing it down to zero. You can see how appealing that is.

… and insurance companies hammer that appeal home with floods of TV ads

Plus direct mail, phone calls, and facebook ads out the wazoo. None of which mention the downsides to Medicare Advantage… 

 which are basically: All the downsides we’re all familiar with from dealing with insurance companies. 

Their network might not include your doctors and providers. It might not include very many providers near you at all. 

And once you find an in-network provider, the insurance company can make you jump through hoops like pre-authorization. Or deny a claim. And then you get to fight through an appeals process. 

I talked with a guy in Texas, Robert Wolpa. He’s got HIV, a pacemaker, other stuff. He said he felt like he was spending half his days on hold, waiting to talk with badly-paid, badly-trained people.

Robert Wolpa: I’m 71. I just turned 71 in November and I’ve got, I’ve got a little of the HIV cognizant crap. Like, my short term memory is gone. And I think to myself, what have I gotten myself into?

Dan: This is the thing: You can be 65 years old, in totally decent shape, playing pickleball or whatever, never seeing a doctor. 

But when you pick Medicare Advantage, most of the time you’re also choosing for an older, sicker version of yourself. Who may need to see specialists, and who may not have as much capacity to fight with insurance companies. 

I mean, most relatively young and healthy people have a hard enough time. 

This is where Traditional Medicare starts to look much more appealing. Practically every provider takes it, and denials are almost unheard of.

But for most people, if you’ve chosen Medicare Advantage, it’s a no-backsies situation. 

You can still sign up for Traditional Medicare, but you may not be able to get a Medigap policy. 

For one thing, it may not be in your budget. Robert Wolpa got a quote: Almost 500 bucks a month. Like a third of his social security check.

Robert Wolpa: And I said, okay. Next option.

Dan: And lots of people don’t have the option at all. In most states, if you don’t sign up at age 65, Medigap plans are allowed to reject you if you have… pre-existing conditions. 

Sarah Jane Tribble: It’s sort of shocking, actually, right? Like, the Affordable Care Act passes and makes it so that everybody with pre existing conditions can get insurance no matter what, but it leaves out the people who might need that the most, who are 65 and older. 

Dan: That’s the person who had introduced us to Robert Wolpa, and helped us understand this whole issue. Sarah Jane Tribble,a reporter with our pals at KFF Health News had just published her own story about the pitfalls of Medicare Advantage.

This comes as a big surprise to a LOT of folks — as Sarah Jane found out while she was reporting her story, and talking about it with friends.

With all of these… advantage — all the marketing, and all the gaps it fills– Medicare Advantage has grown by leaps and bounds in its 20-some years. 

At this point, the majority of seniors are on Medicare Advantage.

So, OK: Long recap, but. That’s what we KNEW a couple of years ago. 

And it turns out — based on what happened last fall, and what’s about to happen this year — the problems are way worse than we knew. 

Which brings us back to our friends in Minnesota. In early October 2025.

News anchor 1: In 90 days, thousands of Minnesotans will lose their Medicare Advantage coverage.

News anchor 2: Many major health care providers are dropping their Medicare Advantage plans in 2026. 

Dan: So, Emily. What the heck happened?

Emily: So that local nonprofit insurance company – UCare– they went broke, and all their Medicare Advantage plans got pulled from the market. Pretty quickly after that, UnitedHealthcare, Aetna, and others sent break up letters of their own to thousands of their beneficiaries.

Lots of people turned to insurance brokers for help. 

But many brokers weren’t calling them back. Because things had started going haywire for them too. Insurance broker Alison Ebert told us she was used to getting paid in cookies and coffee – and this time around, she would mean that literally — because in the days leading up to open enrollment she got an unusual call from her contact at UnitedHealthcare.

Alison Ebert: She said, “I just wanna let you know before you get the email, we’re not paying commissions this year.”

Emily No commissions. No payment from the insurance company for anyone she would enroll in their Medicare Advantage plans. Which is for health insurance brokers — the whole business model. 

Alison Ebert: And my heart just sunk. That was the first phone call, and one by one thereafter, all the major carriers except for Allina Health Aetna, followed suit.

Emily: Other brokers in Minnesota told me the same thing. I asked Alison: why do you think they cut commissions? She says a rep for one of the big companies told her the ugly truth. 

Alison Ebert: With UCare exiting the market,” she said, “Let’s face it, we don’t want everybody that sunk UCare on our plan. And so this is how we’re gonna c- curb enrollments.” 

Emily:  Alison got the message: These insurance companies wanted to curb enrollments. They specifically didn’t want to insure people who they tho  ught “sunk UCare” — meaning, people who used health care. Who filed claims. Who cost money.If brokers didn’t get commissions for selling plans to these folks, a lot fewer of them would sign up.  

Alison Ebert: Because they’ve always told us about 80% of the sales comes through brokers like us.

Emily: Now, a few weeks later, it was October 15, open enrollment was starting, and her phone was ringing off the hook. 47 people on day one. And more every day after that. Plus all her regular clients — the ones whose grandkids she knew by name.

 Alison had to decide what to do  — could she afford to help all those people for free? 

Alison Ebert: I have kids. I mean, I deserve to get paid. I need to put gas in my tank to go to these people’s homes.  

Emily: But Alison didn’t think it was right to leave people hanging.

Alison Ebert: I left a message on my answering machine saying, “You know, due to the fact that we’re not getting paid this season, a lot of brokers left the market and I’m just returning calls as they come. But just be aware that it might take me a couple weeks to get back to you.”

Emily: Instead of going to everyone’s house, she set up office hours at a coffee shop to be able to see as many people as possible.

Meanwhile… Kelli Jo Greiner and her colleagues at the state’s Medicare hotline were scrambling too.

Kelli Jo Greiner: We had wait times of two hours. Nobody wants to wait for even 10 minutes, let alone two hours

Emily: She and her team had to improvise.

Kelli Jo Greiner: We have staff that don’t usually do Medicare counseling. They help with, like, long-term care and other areas, and we even put those folks on the phones to help

Emily: And she wrangled a weekly spot on FOX 9 in the Twin Cities to answer big questions.

Amy Hockert: Medicare Monday is what we’re calling it. A lot of changes coming in 2026. Kelli Jo, thanks for joining us.

Kelli Jo Greiner: Well, thank you. I’m glad to be here again. 

Amy Hockert: All right. Well, let’s roll through it here.

Emily: Kelli Jo told viewers: The most important thing is to be proactive. If you don’t do anything, the system will put you into traditional Medicare — but without a Medigap plan. Oh, and by the way, she told them: Your drug plan will probably disappear too, unless you sign up for a new one.

So — she said, the good news, as far as it goes is: Right now you have a choice. And it’s just like the one you had when you were 65. You get to basically start over if you want, and get a Medigap plan even if you have a pre-existing condition. This is a special situation, they can’t reject you. 

And once you’re on they can’t tell you which doctors to see. Almost every doctor in the country takes traditional Medicare.   

Kelli Jo Greiner: And for many people that is a huge advantage,’cause we have a lot of snowbirds here that go south for the winter.

Emily: But she says most people she talked with decided they just couldn’t afford those Medigap premiums. They were stuck with Medicare Advantage. Only now they had fewer and crummier Medicare Advantage plans to choose from. 

Also, they were more expensive than these folks were used to. 

Kelli Jo says a lot of people had been on plans with no monthly premium — but now all those plans were gone.  

Kelli Jo Greiner: and so they ended up having to switch to a plan with a premium

Emily: And in a lot of cases, without some extra benefits that Kelli Jo says are a big draw. Like discounts on groceries — or free gym memberships, a feature called Silver Sneakers.

Kelli Jo Greiner: and I cannot even tell you how many people called us about Silver Sneakers. They were so upset about that change.

Emily: So people ended up paying more than they were used to —  and getting less. 

Dan: OK. So to recap: some Medicare Advantage plans disappeared.

Emily: Yes.

Dan: The remaining plans weren’t great.

Emily: Right.

Dan: And most people chose them anyway, because they couldn’t afford Medigap.

Emily: Correct. And we can expect more of the same this year– and for who knows how many years ahead.

Dan: So Medicare Advantage is getting shakier– even while it keeps growing. 

Coming right up: how the dynamics behind all of this add up to trouble for all of Medicare. And what we can maybe do about it.   .

This season of An Arm and a Leg is a co-production of Public Road Productions and KFF Health News — that’s a non-profit newsroom covering health issues in America. Their reporters are amazing — you’re about to hear from another of them. We’re honored to be their colleagues.

Dan: Kelli Jo Greiner told us many folks who lost their Medicare Advantage plans  just couldn’t afford Medigap supplements. 

Which, as we’ve been learning, has been one of the big dynamics behind the growth of Medicare Advantage in the first place. 

Emily: Our colleague Julie Appleby found recently, that dynamic is getting starker.

Julie’s a senior correspondent with our pals at KFF Health News.  

Julie Appleby: I cover all things health insurance pretty much, uh, from the Affordable Care Act to Medicare, other kinds of health insurance programs, uh, that kind of thing. 

Emily: Earlier this year, Julie got a call from a broker in Illinois.

Julie Appleby: And he was telling me that more than, like, 80 of his customers were enrolled in a Medicare supplement,

Emily: A specific plan. One that usually had low premiums. 

Julie Appleby: But they suddenly raised their rates by 45%. And he said, “In my 49 years of doing business as a broker, I’ve never seen a premium increase be effective immediately on everyone. So I thought, “Hey, I’m gonna start looking into this.”

Emily:  She found some good data from a company called Telos Actuarial — which showed: this price hike was part of a trend.

Julie Appleby: There were increases going on kind of throughout the industry.

Emily:. On average, the data showed premiums on Medigap went up almost 17% from the previous year.

Not as high as that one plan with 45 percent increase, but still nothing to sneeze at. Brokers and other experts told her: That kind of increase used to be almost unheard of. But for the last bunch of years, it’s become a new normal. 

Julie sees a connection with the growth of Medicare Advantage. 

To understand it — and why everything about Medicare could be getting shakier and shakier — Julie’s gonna introduce us to a key term: Risk Pool. It’s a big part of how insurance prices get set.

Julie Appleby: Insurance is a giant pool, right? We all are in the pool, and everybody kinda shares the cost. The insurance company has to sit down and try to figure out, “Well, gee, I’ve got this pool of people. How sick are they? How, how often are they gonna go to the doctor? How often are they gonna be hospitalized?” And then calculate out, “Okay, so what might that cost me?”

Emily: So a lot depends on: Who’s in the risk pool for any given plan? If Medigap plans are more expensive than Medicare Advantage — but provide better coverage — then, who’s gonna choose the Medigap? People who think they’re gonna *need* that better coverage. Sicker people.

And with millions of people getting the chance at do-overs — because their Medicare Advantage plans got nuked — these Medigap insurers have a bunch of new customers, who — it seems reasonable to think — may be sicker.  

Julie Appleby: So these carriers are, then having to think, “Wow, I’m taking all these people on in this region, so I’m gonna have to raise my premiums to cover what might be those expected costs.” 

Emily : And as premiums grow and grow, what we could see is a kind of vicious cycle. Because as new people turn 65, they’re looking at Medigap premiums that are harder and harder to afford.

So more and more people are attracted to Medicare Advantage. I spoke with a researcher named Laura Skopec – she studies Medicare at the Urban Institute, an economic and social policy think tank. Here’s how she put it: If this trend continues — with Medigap prices driving more people to Medicare Advantage

Laura Skopec: We’re gonna see a traditional Medicare that is sicker and wealthier, which is sort of a weird combination, but it’s gonna be sort of the sickest people that really need good access to specialists, wanna be able to go to the cancer center, you know, any sort of doctor they wanna go to, and the people that can afford Medigap

Emily: Like, the sicker you are, the more you need this, and the more people who need it, the more expensive the supplements will be.

Laura Skopec: The risk pool just keeps on worsening.

Emily: So, expect Medicare Advantage to keep growing. And — as Laura points out — getting more expensive.

Laura Skopec: The Medicare Payment Advisory Commission says we spend about fourteen percent more for everyone who chooses Medicare Advantage over traditional Medicare, and that was really not the point of the Medicare Advantage program, right? It was supposed to use sort of private sector processes to lower costs in Medicare, and it has not done that. 

Emily: In fact, insurance companies are under increasing scrutiny for overcharging the government for Medicare Advantage. 

The feds have been trying to impose some rules to cut down on those extra profits – all very technical stuff which we could devote a whole episode to.     

Dan: Maybe we should

Emily: Yeah and crackdown may have played a role in insurance companies pulling some of these plans off the market. And they say they’re gonna keep yanking more plans off the market unless they get MORE federal dollars. 

Laura: They’re saying that their costs are going up for paying claims, which is probably true, and they point to market exits and other issues as, like, we need a pay bump here to stay in the market.

Emily: All of this — pulling plans off the market, reducing benefits, trying to control who enrolls in their plans — all of this stuff is likely to keep happening. 

So we should talk about what that looks like on the ground, and how seniors can navigate all these changes. 

Remember Erin in Cambridge, Minnesota? 

What happened to her really exemplifies how this kind of thing can play out. And how we can support each other.

So Erin had gotten kicked off her plan when the whole enterprise behind it, UCare, collapsed.

Erin had been really happy with UCare for the four years she was on one of their Advantage plans.

Erin: You call their customer service and they are very helpful. I loved it.

Emily:  she had access to specialists. 

Erin: A thoracic, a neurologist, a urologist, a nephrology. An ENT specialist. 

Emily: Erin had suffered four heart attacks in her late fifties. Because she couldn’t work, she started getting social security and Medicare early — when she was 58. She doesn’t really remember how she ended up picking Medicare Advantage over traditional Medicare.

But it was working for her. Until they pulled the rug out from underneath her.

Erin: I did not want them to go anywhere. I heard that, I was just in tears.

I was so mad. I was like, “No. Now what do I do?” And I look at my husband and said, “Now what?” “

Emily: And she says her husband had the answer immediately.

Erin:Well, we’ll just call Desi.”

Emily: We’ll just call Desi.

Dan: Wait a minute–  Who is Desi?

Emily: You gotta meet Desi. 

Desi Panek: I’m Desi Panek, and I work at the Seven County Senior Federation here in Mora, Minnesota.

Emily: That’s a member-led organization of seniors in eastern and central Minnesota who came together to advocate for themselves, and to help each other with transportation and other stuff seniors need. Including: signing up for — and dealing with — Medicare. 

I met Desi and her boss Lisa Krahn, the Federation’s director, as they were gearing up for this year’s annual enrollment period. 

Lisa: It can’t be as bad as it was last year 

Emily: Yeah yeah. 

Desi: We’ll find out soon. 

Lisa: Oh, God 

Emily: Yep, hold onto your hat. 

Emily: Yep, they’re still dealing with the fallout from last year. This is Lisa:

Lisa Krahn: Still quite a few people who show up, who are calling now, who don’t realize that they haven’t had a plan all year saying, “I just don’t have anything because my old plan left. Well, I wasn’t really paying attention to the mail they were sending me,” kind of a thing.

Emily: Some of those people only found out when they got a bill in the mail. Or when they tried to pick up a prescription, and had to pay out of pocket cuz they didn’t have a drug plan anymore. 

Luckily, Erin got the news before it was too late. She and her husband called Desi, and Desi helped them enroll in a new Medicare Advantage plan. Which Erin says, isn’t as good. 

Erin: Right now I’ve got $1,700 out of pocket going to a pair of hearing aids

Emily: She’s not a fan of the customer service. And she says she had to stop taking one of her preventative medications because her drug plan changed.

Desi and Lisa are operating very much at ground level helping people like Erin, but they definitely have thoughts about the big picture –especially the stark choice between Medicare Advantage and traditional Medicare.

Lisa Krahn: original Medicare is that thing you’ve been waiting your whole life to get. It’s good everywhere. And once you’re in, you’re in. 

Emily: But it’s become too expensive for most people. Meanwhile, Medicare Advantage can really limit people’s access to care.

Lisa Krahn: So, looking for a middle ground between those, it’s, it’s… There, there should be better choices, frankly, instead of such extreme ones.

Desi Panek: Extreme is a really good word for that. I agree. 

Emily: Extreme meaning there’s a big hole in one and there’s too many…

Lisa Krahn: Restrictions on the other. But all the millions we’re dumping into advertising and these private companies, that could have filled the holes on original Medicare a long time ago. And that’s just antithetical to the function and the existence of the insurance industry, which, like the monarchy, maybe we can stop believing in. I’m revealing myself as a single-payer Medicare for All advocate, but we need better Medicare, frankly, you know? It always been shortchanged.

Emily: Dan, speaking of Medicare For All.

Dan: Yeah we really shouldn’t do an episode like this without mentioning it. Especially because it’s been coming up so much in this year’s election season. In Michigan, Abdul El-Sayed won the Democratic Senate primary, and Medicare for All was his number-one pitch.

Abdul El Sayed: Yes, we really can guarantee healthcare in this country. Yes, we really can do it while spending a lot less and getting a lot more if our healthcare doesn’t still fund tens of millions of dollars in healthcare CEO, uh, salaries on top of it.

Emily: People like Lisa — and Abdul El-Sayed — think of Medicare for All as a way to also plug the holes in existing Medicare. 

Dan: Well, huh. OK, I mean, one thing I’m really tuning into is that all these big gaps in Medicare are all driven by the fact that ALL of Medicare — our big public benefit — is actually set up so it requires insurance companies to make a profit in order for it to function. Whether they’re selling Medicare Advantage plans, or Medigap policies.

But then, how do Medicare for All advocates say that spreading Medicare to everybody makes the math actually work better?

Emily: It’s all about that term Julie Appleby introduced us to:  Risk pool. How “risky” the people you’re insuring — the pool — are as a whole. Meaning, how much health care they need on average. The calculations change a lot when the pool is everyone, including people who are 25 as well as 65 and 95 — and when tax money funds health care directly instead of filtering it through private health insurance companies to administer and also take a profit.

In fact, a recent study out of Yale estimates that Medicare For All — that is a Medicare that is completely void of private insurance companies — would reduce annual health expenditures by 1 trillion dollars every year.

Dan: But that’s not just taking insurance companies out of Medicare — it’s taking them out of the whole U.S. health care system.

Emily: Right. In the meantime, some politicians in Washington are talking about tweaks — big and small — to just Medicare itself. 

Vermont Senator Bernie Sanders–

Dan: the original Mr. Medicare For All 

Emily: Yeah – in the meantime, he says we should extend traditional Medicare to cover vision, hearing, and dental. He’s introduced a bill in the Senate to do just that. 

And Oregon Senator Ron Wyden recently introduced a bill that would put an out-of-pocket max on traditional Medicare. That way, people wouldn’t need supplements as much, and Medicare Advantage wouldn’t look as tempting.

Both of those ideas would mean putting more federal money toward traditional Medicare.

Dan: Which doesn’t SEEM like something Congress is likely to do. But what this whole story shows is: it seems like it’s gonna cost us either way. Either we put more public dollars into traditional Medicare, or we keep paying higher prices, collectively and individually,

As for the here and now. If you have Medicare Advantage, but you don’t have a Desi or a Lisa to call, Emily, they gave you a breakdown of what you need to know.

Emily:Yep. Their first piece of advice: open every piece of mail from your insurance company. That’s where you’re going to find out whether your plan is being cancelled. Or where you might find out they’re trying to auto-enroll you into a new plan, which might not be the best one for you.

Desi Panek: The past couple of years we’ve had plans that end a specific plan, but will auto-enroll the e- the enrollee into another plan in the same company.

Lisa Krahn: Crosswalking

Desi Panek: Yes, so that’s a big deal. Pay attention to your mail. Um, you’re gonna get stuck with huge premiums if you just let it roll.

Emily: And find someone to talk to.

Remember Kelli Jo who runs the Medicare hotline for Minnesota? Every single state has one of those agencies. They’re called SHIP — S H I P — state health insurance assistance program. Google your state, SHIP, and Medicare

If you can’t get through, there’s always insurance brokers. Desi has some advice on measuring up whether a broker is trustworthy.

Desi Panek: Ask them if they sell every product available to you in your area. That’s one of the biggest things. I think that a lot of people just assume they’re gonna go to a broker or an agent and they’re gonna get the full scope, and that’s not necessarily true.

Emily: You might want someone who sells Medigap supplements as well as Advantage plans. Someone who does that may be less inclined to push you into whatever’s paying them the highest commissions.

Desi Panek: Word of mouth is a big deal for a lot of people, so asking your friends, your neighbors, uh, “Who did you work with? Are you happy? Are you unhappy? What was the experience like?”

Dan: Talking to your friends and neighbors. It’s like, we gotta rely on each other.

Emily: Which is why I’m kind of obsessed with this Senior Federation thing. People banding together to share information and resources to navigate this ongoing mess.

Desi and Lisa’s group has been operating since 1975. There used to be a robust network of similar groups across the state. Theirs is the last one, but Desi says they’re going strong.

Desi Panek: We’ve got our beautiful community and our thrift stores that keep our doors open and allow us to give that good information out, um, whether it’s what people wanna hear or not.

Dan: And it went by kinda fast but I think I heard her say thrift stores?

Emily: Yep! They have a side hustle. 

Lisa Krahn: We run two thrift stores, the One More Time stores, which give us financial independence. So we’re not dependent on just memberships and just counseling fees or service fees. 

Emily: That’s awesome, yeah, I’m dying to go to those thrift stores. I saw it on the website and I was like…

Desi Panek: Did you see that we won Minnesota’s best thrift store?

Emily: Stop it.

Desi Panek: I mean it.  

Emily: That’s so cool. Oh my God. 

Lisa Krahn: By the Minnesota Star Tribune, yes. It was a popularity contest.

Emily: Amazing. Wow.

Dan: Wow for sure. Emily, thank you so much for all of this reporting.

So here’s where we landed: Medicare is way more broken than we knew!  And we already knew it was kind of a confusing mess with a lot of holes. 

Fixing it will require a huge lift.  The kind of thing that hasn’t seemed like a political possibility. And everybody will have BIG differences of opinion about how a fix should work. There are people who think the government shouldn’t be involved in health care at all. 

Meanwhile, we’ve got what we’ve got.  We’ve got each other. 

And… you just never know what might be possible.

Next time on An Arm and a Leg, we’ll hear about what might be the most radical health care experiment since Medicare itself. 

And the two guys — a Democrat and a Republican — who made it happen.

Till then, take care of yourself. 

This episode of An Arm and a Leg was produced by Emily Pisacreta, with help from our summer intern Lynn Barbera and me, Dan Weissmann— and edited by Ellen Weiss. Izabella Kulkarni provided additional production help.

Reporting for this story was supported in part by Arnold Ventures. Listeners like you are our biggest source of support, and we need you more than ever. If you like what you’re hearing and want it to continue, head to arm and a leg show dot com, slash, support.  

Adam Raymonda is our audio wizard.

Our music is by Dave Weiner and Blue Dot Sessions. 

Amanda Boyd is our Operations Manager. Bea Bosco is our consulting director of operations. 

An Arm and a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in-depth journalism about health issues in America and a core program at KFF, an independent source of health policy research, polling, and journalism.

Zach Dyer is senior audio producer at KFF Health News. He’s editorial liaison to this show.

An Arm and a Leg is distributed by KUOW, Seattle’s NPR news station.

And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor.

They allow us to accept tax-exempt donations. You can learn more about INN at INN.org.

Finally, thank you to everybody who supports this show financially. Listeners like you are our biggest source of funding.

You can join in any time at arm and a leg show, dot com, slash: support.

Thanks! And thanks for listening

An Arm and a Leg is a co-production of KFF Health News and Public Road Productions.

For more from the team at An Arm and a Leg, subscribe to its weekly newsletter, First Aid Kit. You can also follow the show on Facebook, Instagram, LinkedIn, and Bluesky. And if you’ve got stories to tell about the healthcare system, the producers would love to hear from you.

To hear all KFF Health News podcasts, click here.

And subscribe to An Arm and a Leg on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

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

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.