Preparing cancer patients for difficult decisions is an oncologist's job. They don't always remember to do it, however. At the University of Pennsylvania Health System, doctors are nudged to talk about a patient's treatment and end-of-life preferences by an artificially intelligent algorithm that predicts the chances of death.
But it's far from being a set-it-and-forget-it tool. A routine tech checkup revealed the algorithm decayed during the covid-19 pandemic, getting 7 percentage points worse at predicting who would die, according to a 2022 study.
There were likely real-life impacts. Ravi Parikh, an Emory University oncologist who was the study's lead author, told KFF Health News the tool failed hundreds of times to prompt doctors to initiate that important discussion — possibly heading off unnecessary chemotherapy — with patients who needed it.
He believes several algorithms designed to enhance medical care weakened during the pandemic, not just the one at Penn Medicine. "Many institutions are not routinely monitoring the performance" of their products, Parikh said.
Algorithm glitches are one facet of a dilemma that computer scientists and doctors have long acknowledged but that is starting to puzzle hospital executives and researchers: Artificial intelligence systems require consistent monitoring and staffing to put in place and to keep them working well.
In essence: You need people, and more machines, to make sure the new tools don't mess up.
"Everybody thinks that AI will help us with our access and capacity and improve care and so on," said Nigam Shah, chief data scientist at Stanford healthcare. "All of that is nice and good, but if it increases the cost of care by 20%, is that viable?"
Government officials worry hospitals lack the resources to put these technologies through their paces. "I have looked far and wide," FDA Commissioner Robert Califf said at a recent agency panel on AI. "I do not believe there's a single health system, in the United States, that's capable of validating an AI algorithm that's put into place in a clinical care system."
AI is already widespread in healthcare. Algorithms are used to predict patients' risk of death or deterioration, to suggest diagnoses or triage patients, to record and summarize visits to save doctors work, and to approve insurance claims.
If tech evangelists are right, the technology will become ubiquitous — and profitable. The investment firm Bessemer Venture Partners has identified some 20 health-focused AI startups on track to make $10 million in revenue each in a year. The FDA has approved nearly a thousand artificially intelligent products.
Evaluating whether these products work is challenging. Evaluating whether they continue to work — or have developed the software equivalent of a blown gasket or leaky engine — is even trickier.
Take a recent study at Yale Medicine evaluating six "early warning systems," which alert clinicians when patients are likely to deteriorate rapidly. A supercomputer ran the data for several days, said Dana Edelson, a doctor at the University of Chicago and co-founder of a company that provided one algorithm for the study. The process was fruitful, showing huge differences in performance among the six products.
It's not easy for hospitals and providers to select the best algorithms for their needs. The average doctor doesn't have a supercomputer sitting around, and there is no Consumer Reports for AI.
"We have no standards," said Jesse Ehrenfeld, immediate past president of the American Medical Association. "There is nothing I can point you to today that is a standard around how you evaluate, monitor, look at the performance of a model of an algorithm, AI-enabled or not, when it's deployed."
Perhaps the most common AI product in doctors' offices is called ambient documentation, a tech-enabled assistant that listens to and summarizes patient visits. Last year, investors at Rock Health tracked $353 million flowing into these documentation companies. But, Ehrenfeld said, "There is no standard right now for comparing the output of these tools."
And that's a problem, when even small errors can be devastating. A team at Stanford University tried using large language models — the technology underlying popular AI tools like ChatGPT — to summarize patients' medical history. They compared the results with what a physician would write.
"Even in the best case, the models had a 35% error rate," said Stanford's Shah. In medicine, "when you're writing a summary and you forget one word, like ‘fever' — I mean, that's a problem, right?"
Sometimes the reasons algorithms fail are fairly logical. For example, changes to underlying data can erode their effectiveness, like when hospitals switch lab providers.
Sometimes, however, the pitfalls yawn open for no apparent reason.
Sandy Aronson, a tech executive at Mass General Brigham's personalized medicine program in Boston, said that when his team tested one application meant to help genetic counselors locate relevant literature about DNA variants, the product suffered "nondeterminism" — that is, when asked the same question multiple times in a short period, it gave different results.
Aronson is excited about the potential for large language models to summarize knowledge for overburdened genetic counselors, but "the technology needs to improve."
If metrics and standards are sparse and errors can crop up for strange reasons, what are institutions to do? Invest lots of resources. At Stanford, Shah said, it took eight to 10 months and 115 man-hours just to audit two models for fairness and reliability.
Experts interviewed by KFF Health News floated the idea of artificial intelligence monitoring artificial intelligence, with some (human) data whiz monitoring both. All acknowledged that would require organizations to spend even more money — a tough ask given the realities of hospital budgets and the limited supply of AI tech specialists.
"It's great to have a vision where we're melting icebergs in order to have a model monitoring their model," Shah said. "But is that really what I wanted? How many more people are we going to need?"
On the heels of a scuttled hospital merger between rivals in Terre Haute, Indiana, a state senator introduced a bill that would forbid similar mergers in the future.
Last year, nonprofit Union Health tried to acquire the only other acute care hospital in Vigo County by leveraging a state law it helped create that allows hospital monopolies. Now, Sen. Ed Charbonneau, a key architect of the 2021 law, which allows what is known as a "Certificate of Public Advantage," or COPA, wants to repeal it.
"I didn't think I was doing 100% the right thing last time," the Republican, who chairs the Senate health committee, said of co-authoring Indiana's 2021 COPA law. "I do think I am this time."
Indiana is one of 19 states that have COPA laws, which allow hospital mergers that the Federal Trade Commission otherwise considers illegal because they reduce competition and often create monopolies.
In exchange for allowing these deals, the merging hospitals typically agree to meet a number of conditions imposed by the state to mitigate the harms of a monopoly. But health care economists and the FTC have said that state oversight cannot replace competition and that these mergers ultimately harm patients.
The public and the FTC pressured Indiana health regulators to block Union's merger with its rival, Terre Haute Regional Hospital. Just days before a December deadline for the state to issue a decision on whether to approve the deal, Union Health and Terre Haute Regional Hospital pulled their application.
Union Health and Tennessee-based HCA Healthcare, which owns Terre Haute Regional, declined to answer questions about what prompted the decision to scuttle the deal. In a November statement, Union said it planned to submit a new application.
In 2021, Union Health leaders were instrumental in the passage of Indiana's COPA law. They supplied draft language for the bill, according to legislative testimony, and Union Health CEO Steve Holman testified before lawmakers that the merger would improve Vigo County's poor public health rankings.
But Charbonneau's bill would prevent such deals and make Indiana the sixth state to repeal its COPA law.
In 2023, Maine ended its COPA after heeding warnings from the FTC about the harmful effects of such mergers. Minnesota, Montana, North Carolina, and North Dakota have also repealed such laws.
In comments to Indiana regulators, the FTC referenced KFF Health News' reporting on Ballad Health, a 20-hospital monopoly in Tennessee and Virginia, as a cautionary tale against such mergers.
COPAs, such as the one under which Ballad operates, "have proven unwieldy," are "difficult to manage," and "have failed to protect local communities from the harmful effects of anticompetitive hospital mergers," the FTC said in its comments on the proposed Union-Regional merger.
Ballad declined to respond to KFF Health News inquiries regarding the FTC's comments.
Since Ballad launched in 2018 and became the nation's largest state-approved hospital monopoly, it has not lived up to some of its promises, KFF Health News has reported. It has fallen short of quality and charity care goals, according to annual reports from Ballad and the Tennessee Department of Health. After years of problems and complaints from patients, the state is now trying to hold Ballad more accountable for its quality of care.
In a November interview with KFF Health News, Ballad Health CEO Alan Levine attributed the quality-of-care slump to covid-19 and workforce challenges. He said these issues are unrelated to the COPA merger and the monopoly it created.
In Indiana, Republican Gov.-elect Mike Braun has said tackling health care issues will be a top policy priority. Braun's policy agenda to "protect Hoosiers from consolidation" calls for rooting out regulations that "promote consolidation" and pose a "barrier" to competition.
Republicans control the state legislature. Charbonneau, a high-ranking senator, has co-authored several bills to combat consolidation, including through restricting noncompete agreements for primary care physicians and requiring hospitals and other health care businesses to notify Indiana's attorney general of pending mergers and acquisitions.
If Charbonneau's bill to repeal Indiana's COPA law passes during the legislative session beginning Jan. 8, it may prevent Union from acquiring Regional. Union would need to submit a new application and get it approved before Charbonneau's bill would take effect July 1. Both Union and HCA declined to comment on the proposed bill and their future application plans.
The federal Consumer Financial Protection Bureau on Tuesday issued new regulations barring medical debts from American credit reports, enacting a major new consumer protection just days before President Joe Biden is set to leave office.
The rules ban credit agencies from including medical debts on consumers' credit reports and prohibit lenders from considering medical information in assessing borrowers.
These rules, which the federal watchdog agency proposed in June, could be reversed after President-elect Donald Trump takes office Jan. 20. But by finalizing the regulations now, the CFPB effectively dared the incoming Trump administration and its Republican allies in Congress to undue rules that are broadly popular and could help millions of people who are burdened by medical debt.
"People who get sick shouldn't have their financial future upended," CFPB Director Rohit Chopra said in announcing the new rules. "The CFPB's final rule will close a special carveout that has allowed debt collectors to abuse the credit reporting system to coerce people into paying medical bills they may not even owe."
The regulations fulfill a pledge by the Biden administration to address the scourge of health care debt, a problem that touches an estimated 100 million Americans, forcing many to make sacrifices such as limiting food, clothing, and other essentials.
Credit reporting, a threat that has been wielded by medical providers and debt collectors to get patients to pay their bills, is the most common collection tactic used by hospitals, a KFF Health News analysis found.
The impact can be devastating, especially for those with large health care debts.
There is growing evidence, for example, that credit scores depressed by medical debt can threaten people's access to housing and drive homelessness. People with low credit scores can also have trouble getting a loan or can be forced to borrow at higher interest rates.
That has prompted states including Colorado, New York, and California to enact legislation prohibiting medical debt from being included on residents' credit reports or factored into their credit scores. Still, many patients and consumer advocates have pushed for a national ban.
The CFPB has estimated that the new credit reporting rule will boost the credit scores of people with medical debt on their credit reports by an average of 20 points.
But the agency's efforts to restrict medical debt collections have drawn fierce pushback from the collections industry. And the new rules will almost certainly be challenged in court.
Congressional Republicans have frequently criticized the watchdog agency. Last year, then-chair of the House Financial Services Committee Patrick McHenry (R-N.C.) labeled the CFPB's medical debt proposal "regulatory overreach."
More recently, billionaire Elon Musk, whom Trump has tapped to co-lead his initiative to shrink government, called for the elimination of the watchdog agency. "Delete CFPB," Musk posted on the social platform X.
When Michael Adams was researching health insurance options in 2023, he had one very specific requirement: coverage for prosthetic limbs.
Adams, 51, lost his right leg to cancer 40 years ago, and he has worn out more legs than he can count. He picked a gold plan on the Colorado health insurance marketplace that covered prosthetics, including microprocessor-controlled knees like the one he has used for many years. That function adds stability and helps prevent falls.
But when his leg needed replacing last January after about five years of everyday use, his new marketplace health plan wouldn't authorize it. The roughly $50,000 leg with the electronically controlled knee wasn't medically necessary, the insurer said, even though Colorado law leaves that determination up to the patient's doctor, and his has prescribed a version of that leg for many years, starting when he had employer-sponsored coverage.
"The electronic prosthetic knee is life-changing," said Adams, who lives in Lafayette, Colorado, with his wife and two kids. Without it, "it would be like going back to having a wooden leg like I did when I was a kid." The microprocessor in the knee responds to different surfaces and inclines, stiffening up if it detects movement that indicates its user is falling.
People who need surgery to replace a joint typically don't encounter similar coverage roadblocks. In 2021, 1.5 million knee or hip joint replacements were performed in United States hospitals and hospital-owned ambulatory facilities, according to the federal Agency for Healthcare Research and Quality, or AHRQ. The median price for a total hip or knee replacement without complications at top orthopedic hospitals was just over $68,000 in 2020, according to one analysis, though health plans often negotiate lower rates.
To people in the amputee community, the coverage disparity amounts to discrimination.
"Insurance covers a knee replacement if it's covered with skin, but if it's covered with plastic, it's not going to cover it," said Jeffrey Cain, a family physician and former chair of the board of the Amputee Coalition, an advocacy group. Cain wears two prosthetic legs, having lost his after an airplane accident nearly 30 years ago.
AHIP, a trade group for health plans, said health plans generally provide coverage when the prosthetic is determined to be medically necessary, such as to replace a body part or function for walking and day-to-day activity. In practice, though, prosthetic coverage by private health plans varies tremendously, said Ashlie White, chief strategy and programs officer at the Amputee Coalition. Even though coverage for basic prostheses may be included in a plan, "often insurance companies will put caps on the devices and restrictions on the types of devices approved," White said.
An estimated 2.3 million people are living with limb loss in the U.S., according to an analysis by Avalere, a health care consulting company. That number is expected to as much as double in coming years as people age and a growing number lose limbs to diabetes, trauma, and other medical problems.
Fewer than half of people with limb loss have been prescribed a prosthesis, according to a report by the AHRQ. Plans may deny coverage for prosthetic limbs by claiming they aren't medically necessary or are experimental devices, even though microprocessor-controlled knees like Adams' have been in use for decades.
Cain was instrumental in getting passed a 2000 Colorado law that requires insurers to cover prosthetic arms and legs at parity with Medicare, which requires coverage with a 20% coinsurance payment. Since that measure was enacted, about half of states have passed "insurance fairness" laws that require prosthetic coverage on par with other covered medical services in a plan or laws that require coverage of prostheses that enable people to do sports. But these laws apply only to plans regulated by the state. Over half of people with private coverage are in plans not governed by state law.
The Medicare program's 80% coverage of prosthetic limbs mirrors its coverage for other services. Still, an October report by the Government Accountability Office found that only 30% of beneficiaries who lost a limb in 2016 received a prosthesis in the following three years.
Cost is a factor for many people.
"No matter your coverage, most people have to pay something on that device," White said. As a result, "many people will be on a payment plan for their device," she said. Some may take out loans.
The federal Consumer Financial Protection Bureau has proposed a rule that would prohibit lenders from repossessing medical devices such as wheelchairs and prosthetic limbs if people can't repay their loans.
"It is a replacement limb," said White, whose organization has heard of several cases in which lenders have repossessed wheelchairs or prostheses. Repossession is "literally a punishment to the individual."
Adams ultimately owed a coinsurance payment of about $4,000 for his new leg, which reflected his portion of the insurer's negotiated rate for the knee and foot portion of the leg but did not include the costly part that fits around his stump, which didn't need replacing. The insurer approved the prosthetic leg on appeal, claiming it had made an administrative error, Adams said.
"We're fortunate that we're able to afford that 20%," said Adams, who is a self-employed leadership consultant.
Leah Kaplan doesn't have that financial flexibility. Born without a left hand, she did not have a prosthetic limb until a few years ago.
Growing up, "I didn't want more reasons to be stared at," said Kaplan, 32, of her decision not to use a prosthesis. A few years ago, the cycling enthusiast got a prosthetic hand specially designed for use with her bike. That device was covered under the health plan she has through her county government job in Spokane, Washington, helping developmentally disabled people transition from school to work.
But when she tried to get approval for a prosthetic hand to use for everyday activities, her health plan turned her down. The myoelectric hand she requested would respond to electrical impulses in her arm that would move the hand to perform certain actions. Without insurance coverage, the hand would cost her just over $46,000, which she said she can't afford.
Working with her doctor, she has appealed the decision to her insurer and been denied three times. Kaplan said she's still not sure exactly what the rationale is, except that the insurer has questioned the medical necessity of the prosthetic hand. The next step is to file an appeal with an independent review organization certified by the state insurance commissioner's office.
A prosthetic hand is not a luxury device, Kaplan said. The prosthetic clinic has ordered the hand and made the customized socket that will fit around the end of her arm. But until insurance coverage is sorted out, she can't use it.
At this point she feels defeated. "I've been waiting for this for so long," Kaplan said.
Independent Health will make "guaranteed payments" of $34.5 million in installments from 2024 through 2028.
A western New York health insurance provider for seniors and the CEO of its medical analytics arm have agreed to pay a total of up to $100 million to settle Justice Department allegations of fraudulent billing for health conditions that were exaggerated or didn't exist.
Independent Health Association of Buffalo, which operates two Medicare Advantage plans, will pay up to $98 million. Betsy Gaffney, CEO of medical records review company DxID, will pay $2 million, according to the settlement agreement. Neither admitted wrongdoing.
"Today's result sends a clear message to the Medicare Advantage community that the United States will take appropriate action against those who knowingly submit inflated claims for reimbursement," Michael Granston, a DOJ deputy assistant attorney general, said in announcing the settlement on Dec. 20.
Frank Sava, a spokesperson for Independent Health, said in a statement: "The assertions by the DOJ are allegations only, and there has been no determination of liability. This settlement is not an admission of any wrongdoing; it instead allows us to avoid the further disruption, expense, and uncertainty of litigation in a matter that has lingered for over a decade."
Under the settlement, Independent Health will make "guaranteed payments" of $34.5 million in installments from 2024 through 2028. Whether it pays the maximum amount in the settlement will depend on the health plan's financial performance.
Michael Ronickher, an attorney for whistleblower Teresa Ross, called the settlement "historic," saying it was the largest payment yet by a health plan based solely on a whistleblower's fraud allegations. It also was one of the first to accuse a data mining firm of helping a health plan overcharge.
The settlement is the latest in a whirl of whistleblower actions alleging billing fraud by a Medicare Advantage insurer. Medicare Advantage plans are private health plans that cover more than 33 million members, making up over half of all people eligible for Medicare. They are expected to grow further under the incoming Trump administration.
But as Medicare Advantage has gained popularity, regulators at the federal Centers for Medicare & Medicaid Services have struggled to prevent health plans from exaggerating how sick patients are to boost their revenues.
Whistleblowers such as Ross, a former medical coding professional, have helped the government claw back hundreds of millions of dollars in overpayments tied to alleged coding abuses. Ross will receive at least $8.2 million, according to the Justice Department.
Ross said that CMS "created a bounty" for health plans that added medical diagnosis codes as they reviewed patients' charts — and whether those codes were accurate or not "didn't seem to bother some people."
"Billions of dollars are being paid out by CMS for diagnoses that don't exist," Ross told KFF Health News in an interview.
Data Mining
DOJ's civil complaint, filed in September 2021, was unusual in targeting a data analytics venture — and its top executive — for allegedly ginning up bogus payments.
DxID specialized in mining electronic medical records to capture new diagnoses for patients — pocketing up to 20% of the money it generated for the health plan, according to the suit, which said Independent Health used the firm from 2010 through 2017. DxID shut down in 2021.
Gaffney pitched its services to Medicare Advantage plans as "too attractive to pass up," according to the Justice Department complaint.
"There is no upfront fee, we don't get paid until you get paid and we work on a percentage of the actual proven recoveries," Gaffney said, according to the complaint. Timothy Hoover, an attorney for Gaffney, said in a statement that the settlement "is not an admission of any liability by Ms. Gaffney. The settlement simply resolves a dispute and provides closure to the parties."
'A Ton of Money'
CMS uses a complex formula that pays health plans higher rates for sicker patients and less for people in good health. Health plans must retain medical records that document all diagnoses they highlight for reimbursement.
Independent Health violated those rules by billing Medicare for a range of medical conditions that either were exaggerated or not supported by patient medical files, such as billing for treating chronic depression that had been resolved, according to the complaint. In one case, an 87-year-old man was coded as having "major depressive disorder" even though his medical records indicated the problem was "transient," according to the complaint.
DxID also cited chronic kidney disease or renal failure "in the absence of any documentation suggesting that a patient suffered from those conditions," according to the complaint. Past conditions, such as heart attacks, that required no current treatment, also were coded, according to the DOJ.
The suit alleges that Gaffney said renal failure diagnoses were "worth a ton of money to IH [Independent Health] and the majority of people (over) 70 have it at some level."
Ross filed the whistleblower case in 2012 against Group Health Cooperative in Seattle, one of the nation's oldest managed-care groups.
Ross, a former medical coding manager there, alleged that DxID submitted more than $30 million in disease claims — many of which were not valid — on behalf of Group Health for 2010 and 2011. For instance, Ross alleged that the plan billed for "major depression" in a patient described by his doctor as having an "amazingly sunny disposition."
Group Health, now known as the Kaiser Foundation Health Plan of Washington, denied wrongdoing. But it settled the civil case in November 2020 by agreeing to pay $6.3 million. The DOJ filed a second complaint in 2021, against Independent Health, which also used DxID's services.
Ross said she lost her job after her suit became public in 2019 and was unable to secure another one in the medical coding field.
"It was rough at times, but we got through it," she said. Ross, 60, said she is now "happily retired."
False Claims
Whistleblowers sue under the False Claims Act, a federal law dating to the Civil War that allows private citizens to expose fraud against the government and share in any recovery.
At least two dozen such suits, some dating to 2009, have targeted Medicare Advantage plans for overstating the severity of medical conditions, a practice known in the industry as "upcoding." Previous settlements from such suits have totaled more than $600 million.
The whistleblowers have played a key role in holding health insurers accountable.
While dozens of CMS audits have concluded that health plans overcharged the government, the agency has done little to recoup money for the U.S. Treasury.
In a surprise action in late January 2023, CMS announced that it would settle for a fraction of the estimated tens of millions of dollars in overpayments uncovered through its audits dating to 2011 and not impose major financial penalties on health plans until a round of audits for 2018 payments, which have yet to be done. Exactly how much plans will end up paying back is unclear.
"I think CMS should be doing more," said Max Voldman, an attorney who represents Ross.
It seems simple: Require hospitals and insurers to post their negotiated prices for most healthcare services and — bingo — competition follows, yielding lower costs for consumers.
But nearly four years after the first Trump administration's regulations forced hospitals to post massive amounts of pricing information online, the effect on patients' costs is unclear. And while President Joe Biden added requirements to make pricing information more user-friendly, Donald Trump's imminent return to the White House has raised questions about what's next, even though posting prices is an area of rare bipartisan agreement.
The uncertainty of what might happen next led some proponents to lobby Congress to include hospital and insurer price transparency in must-pass legislation before Trump takes office. That would turn both his and Biden's regulations into law, making them less susceptible to being weakened or repealed by a future administration. But that effort failed.
Employers are using transparency data to try to slow growth of their healthcare costs, and "the last thing you want to do is start over," said James Gelfand, president and CEO of the ERISA Industry Committee, which represents large employers who finance their own health plans. His group is among the organizations pressing Congress to act.
"Congress' failure to act is deeply disappointing, but employers and other advocates will redouble our efforts," Gelfand said. "This will get done."
While there are reports that many hospitals are not fully complying, federal regulators have sent thousands of warning letters to hospitals and fined just over a dozen.
The transparency rules require hospitals to list the prices they accept from all insurers for thousands of items and services, from stitches to delivery room costs to X-rays. For consumers, hospitals must also provide a list of 300 "shoppable" services, including bundled prices accepted for common services such as having a baby or getting a hip replacement. Insurers in July 2022 were similarly required to list their negotiated prices, not only for care at hospitals, but also surgery centers, imaging facilities, laboratories, and doctors' offices.
It's a massive and often confusing amount of data that has drawn interest from researchers and commercial outlets like Turquoise Health, which has sought to organize the information to better help ordinary consumers shopping for medical services or employers overseeing workers' health plans.
The data shows a huge variation in prices, both in what hospitals charge and what insurers pay, for the same services. But the result of making those prices public is so far hard to quantify.
A recent study by Turquoise looked at negotiated rates in the nation's 10 largest metro areas for a set of common healthcare services. It found that rates in the top quarter tier — the most expensive category — declined by 6.3% from December 2021 to June 2024, during the time the transparency rules were in place. But negotiated rates for the lowest-cost tier of services rose by 3.4%.
That may indicate hospitals and insurers — who can now see what rivals are charging and paying — have either cut prices or demanded better rates, at least for the costliest services.
Even so, Gerard Anderson, who oversees research into the data as a professor at the Bloomberg School of Public Health at Johns Hopkins University, said the changes Turquoise noted were small and are not reflective of what his team has seen in their own studies.
"So far we have not detected any impact of this data on behavior, of where insurers decide to go or what hospitals do to change prices once they realize what others are charging," Anderson said.
Some health policy experts think it's unlikely the incoming Trump administration would reverse its prior commitment to price transparency.
"I don't see a world where he tanks his own regulations," said Joe Wisniewski, an associate vice president at Turquoise Health. "There is also so much broad bipartisan support on the Hill."
But even after the Biden administration made the data more user-friendly, it's still not very helpful to consumers, Anderson said.
"This data is not telling them the price they will pay. It's telling them the average price people paid last month or last quarter for a similar type of service," he said.
More useful, Anderson and other experts say, are requirements in the price transparency rules that demand insurers offer online calculators for hundreds of nonemergency services. The detailed cost estimates must take into account how much patients have paid toward annual deductibles.
For uninsured consumers or others who don't have access to online calculators, it remains difficult to piece together how much a service might cost from the information hospitals post online. For one thing, not every hospital has posted its negotiated rates.
The Department of Health and Human Services' inspector general said in November an audit of 100 hospitals found that 63 complied with the price transparency rule, while the rest failed to meet one or more requirements.
The advocacy group Patient Rights Advocate, which looked at a sample of 2,000 hospitals, says that only 21% were fully compliant, although it used broader measures for compliance than the inspector general.
"By keeping their prices hidden, hospitals continue to block American consumers from their right to compare prices and protect themselves from overcharges," said Cynthia Fisher, founder and chairman of the group, which has called for stricter rules and enforcement.
Among the biggest-grossing films in America in February 2002 were a war drama about American troops in Somalia ("Black Hawk Down"), an Arnold Schwarzenegger action movie ("Collateral Damage"), and a future Oscar winner about a brilliant mathematician struggling with schizophrenia ("A Beautiful Mind").
But none of these films topped the box office that month. That title went to "John Q.," a movie about health insurance.
Or, more precisely, a story about a desperate father — played by Denzel Washington — who takes a hospital emergency room hostage at gunpoint when his HMO refuses to cover a heart transplant for his young son.
John Q.'s violent quest for justice was, of course, fictional. And even in the film, no one ends up dead.
Tragically, that wasn't the case on the streets of New York City on Dec. 4 when a gunman fatally shot Brian Thompson, CEO of health insurance giant UnitedHealthcare.
But there was nothing new about the anger at health insurers that Thompson's shooting unleashed online — and which suspect Luigi Mangione expressed in a document he allegedly wrote.
In fact, eruptions of public rage have shadowed the American health care system for decades.
In the late 1990s and early 2000s, as "John Q." was hitting movie screens, Americans were revolting against HMOs, whose practice of denying care to plan members to pad their bottom lines made them public enemy No. 1.
Just a few years later, health insurers stoked new ire for rescinding coverage after people were diagnosed with expensive illnesses like cancer. More recently, insurers' widening use of cumbersome prior authorization procedures that slow patients' access to care has provoked yet another round of fury.
The cycle of outrage periodically turns on others in the health care industry as well. Exorbitant bills and aggressive collection tactics, such as garnishing patients' wages, are sapping public trust in hospitals and other medical providers.
And drug companies — perennial poster children for greed and profiteering — have enraged Americans since at least the 1950s, when new "wonder drugs" like steroids were fueling a growing industry.
When Sen. Estes Kefauver, a Tennessee Democrat who had led an investigation of the Mafia, convened hearings in 1959 to probe high prescription prices, his committee received mountains of mail from Americans who reported being fleeced by drugmakers. One retired rail worker told of having to spend more than a third of his retirement income on medicines for himself and his wife.
All this public outcry has occasionally sparked change. President Barack Obama and congressional Democrats leveraged anger at spiking insurance premiums in California to get the Affordable Care Act over the finish line in 2010, a landmark achievement that expanded health coverage to millions of Americans.
But more often, cycles of rage have been so much sound and fury, producing only modest reforms. In some cases, public anger has yielded more headaches for patients.
The HMO backlash in the late 1990s and early 2000s, for example, prompted employers — from whom about half of Americans get their health coverage — to embrace high-deductible health plans. Many employers saw these plans as a way to hold down costs if they couldn't limit patients' choice of medical providers through HMOs. These deductibles, which can reach thousands of dollars a year, are driving tens of millions of Americans into debt.
To many on the left who have long argued for a single-payer, government-run health system, the obstacle to more meaningful relief has been the political power of the same industries — health insurers, drug companies, hospitals — that fuel patient anger.
These industries have indeed proven adept at resisting change that threatened their bottom lines. They've also benefited from a paradox in how Americans think about their health care.
Patients may get angry. They may even lose faith in the system. This year, public views of health care quality fell to the lowest point since Gallup began asking about it in 2001, with 44% of Americans rating quality as excellent or good, down from a high of 62%.
Yet more than 70% said their own health care is excellent or good.
There is much debate about what accounts for this paradox. Are Americans just grateful to have the health protections they do? Are they satisfied because most don't have to use the health care system on a regular basis? Do they simply like their doctor, in the way that voters routinely say they like their own member of Congress but hate Washington politicians? Or do they worry that no matter how frustrating the current system can be, any change risks making the situation worse?
The answer is probably a bit of all of this. Together, such sentiments represent a major challenge for those who hope the current wave of anger at health insurers will drive big improvements.
Could that change? Maybe. These are volatile and unpredictable political times. And the pressure of big medical bills is real. Medical debt, in particular, is exacting a fearsome toll on millions of Americans, KFF Health News' reporting has shown.
But to drive change, advocates looking to harness public anger at the health care industry probably need to rethink their favored solutions. Old ideas like "Medicare for All," long cherished on the left, or a deregulated health care market, long championed by the right, haven't swayed Americans so far, no matter how angry they've been.
I don't know when we'll see meaningful alternatives. One thing that's almost certainly on the way: Hollywood's spin on the death of a health insurance executive gunned down in Midtown Manhattan.
ERWIN, Tenn. — April Boyd texted her husband before she boarded the helicopter.
"So, I don't want to be dramatic," she wrote on Sept. 27, "but we are gonna fly and rescue patients from the rooftop of Unicoi hospital."
Earlier that day, Hurricane Helene roared into the Southern Appalachian Mountains after moving north through Florida and Georgia. The storm prompted a deadly flash flood that tore through Unicoi County in eastern Tennessee, trapping dozens of people on the rooftop of the county hospital.
The fast-moving floodwaters had made earlier rescue attempts by ambulance and boat impossible. Trees, trailers, buildings, caskets, and cars swept past the hospital in murky, brown rapids that overwhelmed the one-story structure with 12 feet of water on all sides.
No one knew how long the hospital's frame would hold or if the rising water would breach the top of the 20-foot-tall building. Little more than a mile downstream, six people at a plastics plant in Erwin's industrial park died in the flood.
"I do not feel good about this," Boyd, a flight nurse for Ballad Health, texted her husband at 1:41 p.m., just before takeoff.
She wrote that she loved him. "If anything goes wrong," she wanted him to tell her daughters "how much I love them," too.
Her fears were well-founded.
In 2018, Unicoi County Hospital relocated from higher ground in the heart of Erwin to the southern edge of town, between Interstate 26 and the Nolichucky River. The new hospital was built in a known flood plain, but the facility wasn't designed to accommodate helicopter landings on its roof. Boyd and her team weren't sure the roof could bear the weight of their 7,200-pound Eurocopter in good weather, let alone during a flash flood.
"I had a horrible feeling about it," she said.
By many accounts, the evacuation of 70 people, including 11 patients, by helicopter that day was a stunning success. The hospital was destroyed, but no one died. No one was even physically injured by the ordeal.
Yet, earth scientists, emergency management officials, and others who spoke to KFF Health News describe the narrow escape from Unicoi County Hospital as a cautionary tale. As climate change forces healthcare leaders and public officials to prepare for severe storms in landlocked parts of the country — where residents haven't historically paid much attention to hurricane warnings — they must be strategic about both the infrastructure design and the locations selected for new projects, like hospitals.
The Biden administration finalized a rule this year designed to make the construction of such projects that receive funding from the Federal Emergency Management Agency more resilient to flooding. But a review by KFF Health News identified about 20 other Tennessee hospitals already built in, or near, flood plains.
Patrick Sheehan, director of the Tennessee Emergency Management Agency, said past weather patterns can lull people into a false sense of security. But, he added, "past is not always prologue. We're going to experience novel, new ways of having disasters."
Historically, the Southern Appalachian Mountains have been the place "where hurricanes go to die," said Ryan Thigpen, an earth and environmental sciences professor at the University of Kentucky whose research focuses on flooding in the region. But as the Gulf of Mexico becomes warmer and storms, like Helene, that move northward into the mountains carry more moisture, weather events will become more severe.
"It's apocalyptic," said Thigpen, of the damage in Erwin. "The next storm may come before they are finished recovering from this. And that's kind of scary."
Hospitals in Flood Plains
All week, Michelle Matson had been worried about Unicoi County Hospital in the oncoming storm.
As a district coordinator for the Tennessee Emergency Management Agency, Matson works with local officials to plan for worst-case scenarios.
Leading up to Hurricane Helene, she'd been in regular communication with the county's emergency management director. The hospital's vulnerability next to the river kept coming up.
"That was the only place we were worried about," Matson said.
But concern over the hospital's location wasn't new.
In November 2013, Unicoi County Memorial Hospital, which opened in 1953, was acquired by Mountain States Health Alliance on the condition that Mountain States would construct a hospital in Erwin to replace the old one.
Two years later, Mountain States purchased a 45-acre tract of land next to a bend in the Nolichucky River, just off Interstate 26. A hospital system press release at the time explained that due diligence had been conducted to ensure, among other things, that the hospital building would not be in a flood plain. It also presented the location as desirable because it was near the interstate and the landscape would provide "a healing environment by taking advantage of the natural beauty of Unicoi County, with the river running along the east side of the property."
Dating back decades, though, flood maps published by FEMA put the entire property in a flood plain. The building itself was in a 500-year flood plain (meaning a 0.2% chance of flooding in any given year), while the only road on and off the property was in a 100-year flood plain (meaning a 1% annual risk).
But it wasn't only FEMA maps that forecast this possibility. In 2001, a report published by Unicoi County marked this land as being in a "flood hazard" area. The report warned of "considerable pressure" to develop flood hazard areas across the county "due to population increase and the need for vacant land."
The same report acknowledged a history of destructive flooding in the county and the risks it faced being situated along "three major streams," including the Nolichucky River, which flows northward out of the Blue Ridge Mountains of western North Carolina straight through Erwin.
"If you start looking at the river's history, there are a number of these notable flood events, and quite a few in the 20th century. They just did not reach this magnitude," said Philip Prince, a geologist with Appalachian Landslide Consultants. His YouTube videos about mountain flooding during Helene have been viewed hundreds of thousands of times. "People should have been expecting more than they did. But again, we have not seen anything like this."
Matthew Rice, a former Unicoi County commissioner, served as chair of the Hospital Visioning Committee for the new hospital in 2015. He said some committee members raised questions during the planning process about the location, but he conceded there weren't many large, flat places to build a hospital in Erwin.
Amid a wave of rural hospital closures across the United States, Erwin residents celebrated when the new hospital opened in 2018. One lawmaker told the Johnson City Press it was "the most modern facility on the planet."
Alan Levine was CEO of Mountain States Health Alliance during that time and later became the head of Ballad Health, when Mountain States merged with a competing hospital system in 2018 to form the largest state-sanctioned hospital monopoly in the country.
Levine said Mountain States was aware the property carried flood risk but noted that the hospital system added levees to protect the building from river flooding at the recommendation of outside consultants. One levee already existed along the river's edge. And the hospital itself was deliberately constructed on a high point of the land, at the same elevation as the interstate, Levine said.
"I feel like everything we did when we built it was done the right way," said Levine, a former healthcare leader in Louisiana and Florida.
Even so, Matson, who lives in Kingsport, about 45 minutes northwest of Erwin, said some residents were quietly critical of the new hospital's location.
"We all thought that it was a stupid idea to build a hospital in a flood plain. It's like, who does that?" Matson said. She said her opinion doesn't represent an official position of the Tennessee Emergency Management Agency.
But Unicoi isn't the only Tennessee hospital built in a flood plain. Eight others across the state were built in moderate- or high-risk flood zones, and a dozen other hospitals are situated just outside them, KFF Health News found.
The hospitals at risk span the length of the state, from Memphis on the western edge to Knoxville in the east, and include big-city general hospitals, smaller rural hospitals, and behavioral health facilities.
Some of the hospitals are decades old. Parkridge East Hospital in Chattanooga, for example, was built in the 1970s inside a high-risk flood zone. Others are more recent — like Creekside Behavioral Health in Kingsport. That building, which opened in 2018, straddles high- and moderate-risk flood zones.
Then there are facilities like Pinewood Springs in Columbia. The 60-bed mental health facility, which opened in 2020, is in a low-risk area, but the main road leading in and out of the hospital lies in a high-risk flood area.
To identify these hospitals, KFF Health News looked for licensed facilities in or near areas that, according to FEMA, have either a high flood risk (with a 1-in-100 chance of flooding in any given year) or moderate risk (a 1-in-500 chance in any given year).
But FEMA's maps likely underestimate the true flood risk, researchers and government watchdogs agree, because they're largely outdated and don't account for current or future conditions, including more frequent and more intense storms and flooding associated with climate change.
Those maps are updated on an ongoing but slow and piecemeal basis. Meanwhile, the federal regulation finalized this year to expand areas considered at risk for current and future flooding also sets more stringent building standards for critical infrastructure projects located in 100-year flood plains and funded by federal taxpayers.
The rule became effective on Sept. 9, less than three weeks before Hurricane Helene ravaged the Southern Appalachians, but it is unclear whether the incoming Trump administration will preserve it.
After he took office in 2017, President Donald Trump revoked federal flood protection standards set up under the Obama administration. Karoline Leavitt, a spokesperson for the incoming Trump administration, did not respond to emailed questions for this article.
An ‘Antiquated and Broken' System
On Sept. 24, three days before the hospital evacuation, the National Hurricane Center issued the first of several warnings predicting significant river flooding and landslides in the Southern Appalachians. Two days before the flood in Erwin, a satellite office of the National Weather Service in Morristown, Tennessee, predicted "life-threatening flash flooding" near the Tennessee-North Carolina state line.
The warnings kept coming. The National Weather Service in upstate South Carolina forecast on Sept. 26, a Thursday, that Helene would amount to one of the region's most significant weather events "in the modern era."
"I don't think people knew what that meant," said Prince, the geologist. "We just didn't have a precedent."
Ballad Health didn't anticipate that Unicoi would flood during the storm, Levine said, even though a hazard vulnerability assessment conducted annually for the hospital identifies external flooding as the second-highest risk facing Unicoi County Hospital, behind only a civil disturbance. The same 2024 assessment rated the hospital's preparedness for a flood as a "3" or "low," the worst possible score.
But a document outlining the hospital's emergency alert procedures makes no mention of flood risk. If anything, hospital leaders said they were anticipating a surge of patients during Hurricane Helene if Erwin and the surrounding area experienced widespread power outages.
"There was no conversation I had with anybody, anywhere about the risk of flooding before Friday morning," Levine said.
The day before, Jennifer Harrah, the hospital's administrator, had called a meeting to discuss the storm. Sean Ochsenbein, an emergency medicine physician and the hospital's chief medical officer, recalled that the group gathered "just to kind of circle the wagons, make sure everybody was on the same page."
Later that day, Harrah spoke to Unicoi County's emergency management director. But "let me be very clear," Ochsenbein said. "Nobody gave us — as Ballad or our hospital — any kind of indication that we would have floodwaters."
And yet little more than 24 hours after their planning meeting, both Harrah and Ochsenbein were stranded on the hospital roof, literally praying to God for their rescue.
"I called my husband, and I called my sons," Harrah said. "I told them that I loved them."
Dozens of hospital patients, staffers, and first responders were rescued by helicopter after floodwaters from the nearby river overwhelmed the building.(Maddy Alewine for KFF Health News)
One reason the impact of the storm seemed to catch people off guard was a disconnect between the strong warnings issued by the federal agencies and the low expectations that many people in the region, including Ballad Health leaders, had of the potential flood risk.
It was sunny outside when people were evacuated from the hospital roof, Thigpen pointed out. It had rained about 5 inches in Erwin over several days, but that was nothing compared with places in the North Carolina mountains that received more than 20 inches over the same period. Rainfall at those higher altitudes eventually drained into the rivers and streams that ultimately destroyed places like Erwin.
But residents in Unicoi County had no clue what was coming their way, Thigpen said, because there weren't river gauges upstream to sound alarms about dangerous water levels.
"I think that our warning systems are antiquated and broken," he said. "These people in Erwin have seen floods — and a lot of big floods — and it's never been anywhere close to this."
Tennessee state climatologist Andrew Joyner is one of several experts now calling for more river gauges to monitor water levels and a network of weather stations in every county designed to collect live precipitation data.
Thirty-eight states already operate similar systems, he said, estimating that setting up and staffing weather stations across Tennessee would cost less than $4 million in the first year.
But the state has failed to act before. Following a catastrophic flood in Waverly, Tennessee, that killed 20 people and destroyed hundreds of homes and businesses in 2021, the Tennessee General Assembly denied a $200 million request to relocate 14 public schools across the state that had been deemed vulnerable to future flooding.
‘Might Not Make It Back'
On the morning of the flood, Matson had stood with the county's emergency management director behind Unicoi County Hospital and watched the rising river. "We both had this, like, sick feeling in our stomach that said we've got to evacuate," she remembered. "I said to him, worse comes to worst, we evacuate, nothing happens. Just blame it on me."
They made the call to start moving patients out of the hospital just before 9:45 a.m. Less than 30 minutes later, the river had breached its banks, cutting a new channel in front of the hospital and eliminating access to the only road on or off the property.
When an ambulance evacuation became untenable, the Tennessee Emergency Management Agency called in swift-water teams, specially designed to rescue people in turbulent waters. But the flash flood had become so violent and the river was so full of debris that the boats couldn't safely carry patients away. Meanwhile, dangerous wind conditions prevented helicopters located to the east or west from immediately flying that morning to rescue everyone by air.
"To be honest, I really thought we may not make it back" from the rescue mission, Boyd, the flight nurse, said.
When the wind started to die down that afternoon, Virginia State Police deployed two helicopters to rescue patients. Eventually, three Black Hawk helicopters from the Tennessee National Guard assisted in the effort. Pilots were required to make multiple round trips between the hospital and the local high school to evacuate four or five people at a time who had been stranded by the flood. Some patients stranded in boats near the hospital were hoisted into helicopters, while those who were stranded on the roof were either carried onto the aircraft or climbed aboard while the helicopters lightly touched down on their skids.
As the afternoon wore on and the evacuation was nearing its completion, pilot Jeff Bush with the Virginia State Police said he learned that the hospital building was weakening. They weren't sure how much longer it would hold.
"It was intense," he said. "The fact that the building is still standing is, I think, kind of amazing."
Ballad Health evacuated two other hospitals and one nursing home by ambulance within 24 hours of the flood in Erwin, but none of those sustained damage. Meanwhile, what's left of Unicoi County Hospital stands next to the Nolichucky in a field of mud and displaced river rocks.
For now, Ballad Health has opened a temporary urgent care center and plans to establish an emergency department at the site of the former Unicoi County Memorial Hospital in downtown Erwin.
Levine said Ballad Health will eventually rebuild a full-service hospital, but he estimated the project would cost $50 million, roughly twice as much as it did in 2018. It remains unclear where it would be built.
Probably not in a flood plain, Levine said. "I would avoid it if I could."
KINGSPORT, Tenn. — Jerry Qualls had a heart attack in 2022 and was rushed by ambulance to Holston Valley Medical Center, where he was hospitalized for a week and kept alive by a ventilator and blood pump, according to his medical records.
His wife, Katherine Qualls, said his doctors offered little hope. In an interview and a written complaint to the Tennessee government, she said doctors at Holston Valley told her that her husband would not qualify for a heart transplant and shouldn't be expected to recover.
Defiant, she insisted he be transferred hours away to a hospital in Nashville. Within days of leaving Holston Valley, Jerry Qualls was awake and sitting upright, his wife said, and he ultimately received a lifesaving heart transplant.
"How many families don't know how to get a transfer and their loved one dies?" Katherine Qualls wrote in her complaint to the state. "My husband would have been dead within a few days if I didn't get him out when I did."
Holston Valley Medical Center is a flagship of Ballad Health, a 20-hospital system in northeastern Tennessee and southwestern Virginia that is the only option for hospital care in a large swath of Appalachia. Ballad formed six years ago when lawmakers in both states, in an effort to prevent hospital closures, waived federal antitrust laws so two rival health systems could merge. The merger created the largest state-sanctioned hospital monopoly in the nation.
Since then, Ballad has largely kept those hospitals open. But the monopoly has also fallen short of about three-fourths of the quality-of-care goals set by the states over the last three fiscal years, including failing to meet state benchmarks on infections, mortality, emergency room speed, and patient satisfaction, according to annual reports from the Tennessee Department of Health and Ballad itself.
Some local residents have become wary, afraid, or unwilling to seek care at Ballad hospitals and must drive over an hour to reach other options, according to written complaints to the Tennessee government and state lawmakers, public hearing testimony, and KFF Health News interviews conducted over the past year with patients, family members, local leaders, and some officials who once publicly supported the monopoly, including a former government consultant and one state lawmaker. Many of those who submitted complaints or were interviewed allege that paper-thin staffing at Ballad hospitals and ERs is the root cause of the monopoly's quality-of-care woes.
In a two-hour interview vigorously defending the company, Ballad Health CEO Alan Levine said the hospitals are rapidly recovering from a quality-of-care slump caused by COVID-19 and a subsequent rise in nursing turnover and staff shortages. These issues affected hospitals nationwide, Levine said, and were not related to the Ballad merger or the monopoly it created.
Levine declined to discuss specific complaints from patients. But he said that each of the complaints referenced in this article took issue with medical decisions made by doctors in Ballad hospitals — not "any policy or practice at Ballad."
"I can understand if the patients, if the wife, was upset about the medical decisions they made if it turned out to be wrong," Levine said. "But that has nothing to do with the merger, OK? That's a completely different issue, and it happens in hospitals all over the country."
In the interview with KFF Health News and in the days that followed, Levine flexed considerable connections to officials in the Tennessee government. As Levine spoke in a boardroom at Ballad's hilltop headquarters, he was flanked by three local mayors who voiced support for the hospitals and said complaints came from a vocal minority of their constituents. Days later, Levine got two Tennessee state agency directors and a former state health commissioner to provide emails or text messages supporting statements he made during the interview.
Logan Grant, executive director of the Tennessee Health Facilities Commission, which processes complaints against hospitals for the state, said in a statement prompted by Levine that Ballad hospitals are "not an outlier in terms of substantiated survey findings."
Joe Grandy, the mayor of Tennessee's Washington County, where Ballad is headquartered, said most residents consider the quality of care in the area "about as good as it gets."
Brenda Getaz certainly doesn't.
Getaz, 76, who spent three decades as a hospital official specializing in quality standards before retiring to Washington County, said she plans to move to Atlanta if state governments do not take action to fix Ballad in the coming year. Getaz said local medical professionals she trusts have urged her to move away so she does not have to rely on Ballad for care.
"I'm frightened to be taken to a Ballad facility," she said.
Glimpses of Government Concern
The Tennessee Department of Health, which has the most direct oversight over Ballad Health, over the past year has declined multiple interview requests to discuss the hospital monopoly. Department emails reviewed by KFF Health News, some of which were obtained through public record requests, offer glimpses of concern inside the agency.
Emails show the health department has attempted to hold Ballad more accountable for its quality of care in closed-door negotiations and is investigating Holston Valley's treatment of a recent heart patient after receiving detailed complaints from his family. In a 2023 email, Tennessee Health Commissioner Ralph Alvarado reacted to a news story about low job satisfaction among Ballad nurses by writing: "Ouch. … What are they doing to address this?"
In another email from the same year, Alvarado praised an informal report submitted at a public hearing that concluded Ballad's monopoly had caused more harm than good. The report was written by Wally Hankwitz, a retired health care executive who once led a physician management company in Kingsport. The report levied pages of criticism against Ballad's "sub-par" performance and called for the monopoly to end.
"THIS communication from the COPA hearing is particularly good," the health commissioner wrote to some of his staff. "Totally based on data. I would almost like to hear Ballad's response to this."
When asked to respond to the Hankwitz report, Levine said it was "full of errors" and that "no credible institution would pay attention to it."
Despite concerns, Tennessee and Virginia have each year determined that the benefits of the Ballad monopoly outweigh any negative impacts, issuing stamps of approval that allow the monopoly to continue. This has occurred, at least in part, because both states grade Ballad against scoring rubrics that do not prioritize quality of care.
Larry Fitzgerald, a retired Tennessee consultant who monitored the monopoly for the state for more than five years and always gave Ballad high marks, said in an interview that his hands were tied by the state's lenient grading system, which allowed Ballad to succeed on paper even when it failed to meet the state's quality-of-care goals.
Fitzgerald said he is unconvinced that the state-sanctioned monopoly had prevented any hospital closures and said the merger had "probably not" benefited local residents overall.
When asked where he would get medical attention if he lived in northeastern Tennessee or southwestern Virginia, Fitzgerald immediately responded, "I'm not going to a Ballad hospital."
In his interview, Levine alleged Fitzgerald had "basically defrauded the state" by not raising these criticisms of Ballad in his public reports on the monopoly and said it was "irresponsible" and "obscene" to express his concerns about quality of care after retiring.
'Horror Stories' From Ballad Patients
Tennessee House member Bud Hulsey, a Republican from Kingsport, wrote in a 2023 letter to the state health department that he "was an avid supporter of the merger" that created Ballad but since then had become "concerned" and "saddened" by the state of the local hospitals.
In a recent interview, Hulsey said that while his family has received excellent care from Ballad, his constituents have told him "horror stories" for years.
"I had people call me from the waiting room after they've sat there for 12 or 14 hours," Hulsey said. "The scales have far more complaints on them than accolades."
Others have soured on the monopoly, too. Joe Macione, who for years was on the board of Wellmont Health System, one of the rival companies that became Ballad, once publicly advocated for the merger.
In an interview, Macione said state leaders should have admitted years ago that the monopoly was a mistake.
"It has not worked," said Macione, 87. "All my family knows that, if I have the time, I want to go to a highly graded hospital, either in Asheville or Knoxville."
Ballad Health was created in 2018 after Tennessee and Virginia officials waived federal anti-monopoly laws and approved the nation's biggest hospital merger, based on what's called a Certificate of Public Advantage, or COPA, agreement. Ballad is now the only option for hospital care for most of the approximately 1.1 million people in a 29-county region at the nexus of Tennessee, Virginia, Kentucky, and North Carolina.
In the years since, there have been multiple signs of discontent with and within Ballad hospitals. In 2019, protesters gathered daily for eight months outside Holston Valley to oppose the closure of the neonatal intensive care unit and the downgrading of a trauma center. (Ballad has said the NICU closure was necessary and benefited patients, and a study published this year said the trauma changes saved lives.)
In 2020, Bristol Regional Medical Center CEO Greg Neal resigned after it was discovered he made the initial incision in a heart surgery despite not being a doctor, according to Tennessee state records. (Levine said in his interview that the resignation shows Ballad is holding employees accountable.)
In 2022, 14 cardiologists signed a letter warning of "severe limitations" in the Bristol Regional cardiac catheterization lab that were affecting patient safety and delaying procedures for weeks or months. (Ballad said in a letter to the Tennessee government that it worked with the cardiologists, who it said were partly to blame, to make the lab more efficient.)
In 2023, Ballad Health was ranked last among 200 large health care organizations in an analysis of nurse satisfaction published by an MIT business magazine. (Levine dismissed this analysis as unscientific.) This year, the Federal Trade Commission cited Ballad as a cautionary tale while opposing a similar hospital merger under consideration in Indiana, and a longtime Kingsport doctor took a parting shot at Ballad in his obituary. (Ballad declined to comment on either topic.)
And in August, the widow of a Tennessee sheriff filed a lawsuit alleging that Ballad caused her husband's death and intentionally understaffed hospitals "to save money." Brenda Tester, the wife of Johnson County Sheriff Eddie Tester, alleged in that lawsuit that Ballad put her husband on blood thinners and then gave him an unnecessary liver biopsy, causing "life ending internal blood loss" that led to "his cardiac arrest and ultimately his sudden death."
Ballad has yet to respond to the Tester lawsuit in court. Levine said in his interview that the doctors who treated the sheriff were not employed by Ballad but merely contracted to work in its hospitals.
Some of Ballad's most determined critics are family members of Anton Maki Jr., a former Holston Valley doctor who returned to the hospital as a patient in February. The family has filed complaints with multiple Tennessee agencies and the federal government and provided emails to KFF Health News showing that Tennessee is investigating Maki's case.
In an interview and in those complaints, Maki's family members allege Holston Valley gave Maki improper treatment, even though his symptoms and lab tests made it obvious that he was having a serious heart attack that required urgent attention.
The improper care did "permanent damage" to Maki's heart, the family's complaints allege. That damage required him to have a permanent mechanical heart pump surgically implanted at a non-Ballad hospital, said one of his daughters, Alexandra Maki, who is a surgeon in Kentucky. She said her father died after a fall three months later while still in a weakened state.
Alexandra Maki said that her father had been alarmed by the Ballad monopoly for years but that she didn't fully appreciate his warnings until she witnessed his care at Holston Valley firsthand.
"I filed these complaints because it is my duty as a doctor to report what I saw," Alexandra Maki said. "That was not care. It is a facade of a hospital. It is a well-oiled death machine."
KFF Health News reporter Samantha Liss contributed to this article.
With Donald Trump's return to the White House and Republicans taking full control of Congress in 2025, the Affordable Care Act's Medicaid expansion is back on the chopping block.
More than 3 million adults in nine states would be at immediate risk of losing their health coverage should the GOP reduce the extra federal Medicaid funding that's enabled states to widen eligibility, according to KFF, a health information nonprofit that includes KFF Health News, and the Georgetown University Center for Children and Families. That's because the states have trigger laws that would swiftly end their Medicaid expansions if federal funding falls.
The states are Arizona, Arkansas, Illinois, Indiana, Montana, New Hampshire, North Carolina, Utah, and Virginia.
The 2010 Affordable Care Act encouraged states to expand Medicaid programs to cover more low-income Americans who didn't get health insurance through their jobs. Forty states and the District of Columbia agreed, extending health insurance since 2014 to an estimated 21 million people and helping drive the U.S. uninsured rate to record lows.
In exchange, the federal government pays 90% of the cost to cover the expanded population. That's far higher than the federal match for other Medicaid beneficiaries, which averages about 57% nationwide.
Conservative policy groups, which generally have opposed the ACA, say the program costs too much and covers too many people. Democrats say the Medicaid expansion has saved lives and helped communities by widening coverage to people who could not afford private insurance.
If Congress cuts federal funding, Medicaid expansion would be at risk in all states that have opted into it — even those without trigger laws — because state legislatures would be forced to make up the difference, said Renuka Tipirneni, an associate professor at the University of Michigan's School of Public Health.
Decisions to keep or roll back the expansion "would depend on the politics at the state level," Tipirneni said.
For instance, Michigan approved a trigger as part of its Medicaid expansion in 2013, when it was controlled by a Republican governor and legislature. Last year, with the government controlled by Democrats, the state eliminated its funding trigger.
Six of the nine states with trigger laws — Arizona, Arkansas, Indiana, Montana, North Carolina, and Utah — went for Trump in the 2024 election.
Most of the nine states' triggers kick in if federal funding falls below the 90% threshold. Arizona's trigger would eliminate its expansion if funding falls below 80%.
Montana's law rolls back expansion below 90% funding but allows it to continue if lawmakers identify additional funding. Under state law, Montana lawmakers must reauthorize its Medicaid expansion in 2025 or the expansion will end.
Across the states with triggers, between 3.1 million and 3.7 million people would swiftly lose their coverage, researchers at KFF and the Georgetown center estimate. The difference depends on how states treat people who were added to Medicaid before the ACA expansion; they may continue to qualify even if the expansion ends.
Three other states — Iowa, Idaho, and New Mexico— have laws that require their governments to mitigate the financial impact of losing federal Medicaid expansion funding but would not automatically end expansions. With those three states included, about 4.3 million Medicaid expansion enrollees would be at risk of losing coverage, according to KFF.
The ACA allowed Medicaid expansions to adults with incomes up to 138% of the federal poverty level, or about $20,783 for an individual in 2024.
Nearly a quarter of the 81 million people enrolled in Medicaid nationally are in the program due to expansions.
"With a reduction in the expansion match rate, it is likely that all states would need to evaluate whether to continue expansion coverage because it would require a significant increase in state spending," said Robin Rudowitz, vice president and director of the Program on Medicaid and the Uninsured at KFF. "If states drop coverage, it is likely that there would be an increase in the number of uninsured, and that would limit access to care across red and blue states that have adopted expansion."
States rarely cut eligibility for social programs such as Medicaid once it's been granted.
The triggers make it politically easier for state lawmakers to end Medicaid expansion because they would not have to take any new action to cut coverage, said Edwin Park, a research professor at the Georgetown University Center for Children and Families.
To see the impact of trigger laws, consider what happened after the Supreme Court in 2022 struck down Roe v. Wade and, with it, the constitutional right to an abortion. Conservative lawmakers in 13 states had crafted trigger laws that would automatically implement bans in the event a national right to abortion were struck down. Those state laws resulted in restrictions taking effect immediately after the court ruling, or shortly thereafter.
States adopted triggers as part of Medicaid expansion to win over lawmakers skeptical of putting state dollars on the hook for a federal program unpopular with most Republicans.
It's unclear what Trump and congressional Republicans will do with Medicaid after he takes office in January, but one indicator could be a recent recommendation from the Paragon Health Institute, a leading conservative policy organization led by former Trump health adviser Brian Blase.
Paragon has proposed that starting in 2026 the federal government would phase down the 90% federal match for expansion until 2034, when it would reach parity with each state's federal match for its traditional enrollees. Under that plan, states could still get ACA Medicaid expansion funding but restrict coverage to enrollees with incomes up to the federal poverty level. Currently, to receive expansion funding, states must offer coverage to everyone up to 138% of the poverty level.
Daniel Derksen, director of the Center for Rural Health at the University of Arizona, said it's unlikely Arizona would move to eliminate its trigger and make up for lost federal funds. "It would be a tough sell right now as it would put a big strain on the budget," he said.
Medicaid has been in the crosshairs of Republicans in Washington before. Republican congressional leaders in 2017 proposed legislation to cut federal expansion funding, a move that would have shifted billions in costs to states. That plan, part of a strategy to repeal Obamacare, ultimately failed.