Private Medicaid health plans lost millions of members in the past year as pandemic protections that prohibited states from dropping anyone from the government program expired.

But despite Medicaid’s unwinding, as it’s known, at least two of the five largest publicly traded companies selling plans have continued to increase revenue from the program, according to their latest earnings reports.

“It’s a very interesting paradox,” said Andy Schneider, a research professor at Georgetown University’s McCourt School of Public Policy, of plans’ Medicaid revenue increasing despite enrollment drops.

Medicaid, the state-federal health program for low-income and disabled people, is administered by states. But most people enrolled in the program get their health care through insurers contracted by states, including UnitedHealthcare, Centene, and Molina.

The companies persuaded states to pay them more money per Medicaid enrollee under the assumption that younger and healthier people were dropping out — presumably for Obamacare coverage or employer-based health insurance, or because they didn’t see the need to get coverage — leaving behind an older and sicker population to cover, their executives have told investors.

Several of the companies reported that states have made midyear and retrospective changes in their payments to plans to account for the worsening health status of members.

In an earnings call with analysts on April 25, Molina Healthcare CEO Joe Zubretsky said 19 states increased their payment rates this year to adjust for sicker Medicaid enrollees. “States have been very responsive,” Zubretsky said. “We couldn’t be more pleased with the way our state customers have responded to having rates be commensurate with normal cost trends and trends that have been influenced by the acuity shift.”

Health plans have faced much uncertainty during the Medicaid unwinding, as states began reassessing enrollees’ eligibility and dropping those deemed no longer qualified or who lost coverage because of procedural errors. Before the unwinding, plans said they expected the overall risk profile of their members to go up because those remaining in the program would be sicker.

UnitedHealthcare, Centene, and Molina had Medicaid revenue increases ranging from 3% to 18% in 2023, according to KFF. The two other large Medicaid insurers, Elevance and CVS Health, do not break out Medicaid-specific revenue.

The Medicaid enrollment of the five companies collectively declined by about 10% from the end of March 2023 through the end of December 2023, from 44.2 million people to 39.9 million, KFF data shows.

In the first quarter of 2024, UnitedHealth’s Medicaid revenue rose to $20.5 billion, up from $18.8 billion in the same quarter of 2023.

Molina on April 24 reported nearly $7.5 billion in Medicaid revenue in the first quarter of 2024, up from $6.3 billion in the same quarter a year earlier.

On April 26, Centene reported that its Medicaid enrollment fell 18.5% to 13.3 million in the first quarter of 2024 compared with the same period a year ago. The company’s Medicaid revenue dipped 3% to $22.2 billion.

Unlike UnitedHealthcare, whose Medicaid enrollment fell to 7.7 million in March 2024 from 8.4 million a year prior, Molina’s Medicaid enrollment rose in the first quarter of 2024 to 5.1 million from 4.8 million in March 2023. Molina’s enrollment jump last year was partly a result of its having bought a Medicaid plan in Wisconsin and gained a new Medicaid contract in Iowa, the company said in its earnings news release.

Molina added 1 million members because states were prohibited from terminating Medicaid coverage during the pandemic. The company has lost 550,000 of those people during the unwinding and expects to lose an additional 50,000 by June.

About 90% of Molina Medicaid members have gone through the redetermination process, Zubretsky said.

The corporate giants also offset the enrollment losses by getting more Medicaid money from states, which they use to pass on higher payments to certain facilities or providers, Schneider said. By holding the money temporarily, the companies can count these “directed payments” as revenue.

Medicaid health plans were big winners during the pandemic after the federal government prohibited states from dropping people from the program, leading to a surge in enrollment to about 93 million Americans.

States made efforts to limit health plans’ profits by clawing back some payments above certain thresholds, said Elizabeth Hinton, an associate director at KFF.

But once the prohibition on dropping Medicaid enrollees was lifted last spring, the plans faced uncertainty. It was unclear how many people would lose coverage or when it would happen. Since the unwinding began, more than 20 million people have been dropped from the rolls.

Medicaid enrollees’ health care costs were lower during the pandemic, and some states decided to exclude pandemic-era cost data as they considered how to set payment rates for 2024. That provided yet another win for the Medicaid health plans.

Most states are expected to complete their Medicaid unwinding processes this year.

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CHARLESTON, S.C. — When he recently walked into the dental clinic at the Medical University of South Carolina donning a bright-blue pullover with “In Our DNA SC” embroidered prominently on the front, Lee Moultrie said, two Black women stopped him to ask questions.

“It’s a walking billboard,” said Moultrie, a health care advocate who serves on the community advisory board for In Our DNA SC, a study underway at the university that aims to enroll 100,000 South Carolinians — including a representative percentage of Black people — in genetics research. The goal is to better understand how genes affect health risks such as cancer and heart disease.

Moultrie, who is Black and has participated in the research project himself, used the opportunity at the dental clinic to encourage the women to sign up and contribute their DNA. He keeps brochures about the study in his car and at the barbershop he visits weekly for this reason. It’s one way he wants to help solve a problem that has plagued the field of genetics research for decades: The data is based mostly on DNA from white people.

Project leaders in Charleston told KFF Health News in 2022 that they hoped to enroll participants who reflect the demographic diversity of South Carolina, where just under 27% of residents identify as Black or African American. To date, though, they’ve failed to hit that mark. Only about 12% of the project’s participants who provided sociodemographic data identify as Black, while an additional 5% have identified as belonging to another racial minority group.

“We’d like to be a lot more diverse,” acknowledged Daniel Judge, principal investigator for the study and a cardiovascular genetics specialist at the Medical University of South Carolina.

Lack of diversity in genetics research has real health care implications. Since the completion more than 20 years ago of the Human Genome Project, which mapped most human genes for the first time, close to 90% of genomics studies have been conducted using DNA from participants of European descent, research shows. And while human beings of all races and ancestries are more than 99% genetically identical, even small differences in genes can spell big differences in health outcomes.

“Precision medicine” is a term used to describe how genetics can improve the way diseases are diagnosed and treated by considering a person’s DNA, environment, and lifestyle. But if this emerging field of health care is based on research involving mostly white people, “it could lead to mistakes, unknowingly,” said Misa Graff, an associate professor in epidemiology at the University of North Carolina and a genetics researcher.

In fact, that’s already happening. In 2016, for example, research found that some Black patients had been misdiagnosed with a potentially fatal heart condition because they’d tested positive for a genetic variant thought to be harmful. That variant is much more common among Black Americans than white Americans, the research found, and is considered likely harmless among Black people. Misclassifications can be avoided if “even modest numbers of people from diverse populations are included in sequence databases,” the authors wrote.

The genetics research project in Charleston requires participants to complete an online consent form and submit a saliva sample, either in person at a designated lab or collection event or by mail. They are not paid to participate, but they do receive a report outlining their DNA results. Those who test positive for a genetic marker linked to cancer or high cholesterol are offered a virtual appointment with a genetics counselor free of charge.

Some research projects require more time from their volunteers, which can skew the pool of participants, Graff said, because not everyone has the luxury of free time. “We need to be even more creative in how we obtain people to help contribute to studies,” she said.

Moultrie said he recently asked project leaders to reach out to African American media outlets throughout the Palmetto State to explain how the genetics research project works and to encourage Black people to participate. He also suggested that when researchers talk to Black community leaders, such as church pastors, they ought to persuade those leaders to enroll in the study instead of simply passing the message along to their congregations.

“We have new ideas. We have ways we can do this,” Moultrie said. “We’ll get there.”

Other ongoing efforts are already improving diversity in genetics research. At the National Institutes of Health, a program called “All of Us” aims to analyze the DNA of more than 1 million people across the country to build a diverse health database. So far, that program has enrolled more than 790,000 participants. Of these, more than 560,000 have provided DNA samples and about 45% identify as being part of a racial or ethnic minority group.

“Diversity is so important,” said Karriem Watson, chief engagement officer for the All of Us research program. “When you think about groups that carry the greatest burden of disease, we know that those groups are often from minoritized populations.”

Diverse participation in All of Us hasn’t come about by accident. NIH researchers strategically partnered with community health centers, faith-based groups, and Black fraternities and sororities to recruit people who have been historically underrepresented in biomedical research.

In South Carolina, for example, the NIH works with Cooperative Health, a network of federally qualified health centers near the state capital that serve many patients who are uninsured and Black, to recruit patients for All of Us. Eric Schlueter, chief medical officer of Cooperative Health, said the partnership works because their patients trust them.

“We have a strong history of being integrated into the community. Many of our employees grew up and still live in the same communities that we serve,” Schlueter said. “That is what is part of our secret sauce.”

So far, Cooperative Health has enrolled almost 3,000 people in the research program, about 70% of whom are Black.

“Our patients are just like other patients,” Schlueter said. “They want to be able to provide an opportunity for their children and their children’s children to have better health, and they realize this is an opportunity to do that.”

Theoretically, researchers at the NIH and the Medical University of South Carolina may be trying to recruit some of the same people for their separate genetics studies, although nothing would prevent a patient from participating in both efforts.

The researchers in Charleston acknowledge they still have work to do. To date, In Our DNA SC has recruited about half of the 100,000 people it hopes for, and of those, about three-quarters have submitted DNA samples.

Caitlin Allen, a program investigator and a public health researcher at the medical university, acknowledged that some of the program’s tactics haven’t succeeded in recruiting many Black participants.

For example, some patients scheduled to see providers at the Medical University of South Carolina receive an electronic message through their patient portal before an appointment, which includes information about participating in the research project. But studies show that racial and ethnic minorities are less likely to engage with their electronic health records than white patients, Allen said.

“We see low uptake” with that strategy, she said, because many of the people researchers are trying to engage likely aren’t receiving the message.

The study involves four research coordinators trained to take DNA samples, but there’s a limit to how many people they can talk to face-to-face. “We’re not necessarily able to go into every single room,” Allen said.

That said, in-person community events seem to work well for enrolling diverse participants. In March, In Our DNA SC research coordinators collected more than 30 DNA samples at a bicentennial event in Orangeburg, South Carolina, where more than 60% of residents identify as Black. Between the first and second year of the research project, Allen said, In Our DNA SC doubled the number of these community events that research coordinators attended.

“I would love to see it ramp up even more,” she said.

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

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

Some justices suggested the Supreme Court had said its piece on abortion law when it overturned Roe v. Wade in 2022. This term, however, the court has agreed to review another abortion case. At issue is whether a federal law requiring emergency care in hospitals overrides Idaho’s near-total abortion ban. A decision is expected by summer.

Meanwhile, the Centers for Medicare & Medicaid finalized the first-ever minimum staffing requirements for nursing homes participating in the programs. But the industry argues that there are not enough workers to hire to meet the standards.

This week’s panelists are Julie Rovner of KFF Health News, Joanne Kenen of the Johns Hopkins University’s nursing and public health schools and Politico Magazine, Tami Luhby of CNN, and Alice Miranda Ollstein of Politico.

Panelists Joanne Kenen Johns Hopkins University and Politico @JoanneKenen Read Joanne's articles. Tami Luhby CNN @Luhby Read Tami's stories. Alice Miranda Ollstein Politico @AliceOllstein Read Alice's stories.

Among the takeaways from this week’s episode:

• This week’s Supreme Court hearing on emergency abortion care in Idaho was the first challenge to a state’s abortion ban since the overturn of the constitutional right to an abortion. Unlike previous abortion cases, this one focused on the everyday impacts of bans on abortion care — cases in which pregnant patients experienced medical emergencies.
• Establishment medical groups and doctors themselves are getting more vocal and active as states set laws on abortion access. In a departure from earlier political moments, some major medical groups are campaigning on state ballot measures.
• Medicaid officials this week finalized new rules intended to more closely regulate managed-care plans that enroll Medicaid patients. The rules are intended to ensure, among other things, that patients have prompt access to needed primary care doctors and specialists.
• Also this week, the Federal Trade Commission voted to ban most “noncompete” clauses in employment contracts. Such language has become common in health care and prevents not just doctors but other health workers from changing jobs — often forcing those workers to move or commute to leave a position. Business interests are already suing to block the new rules, claiming they would be too expensive and risk the loss of proprietary information to competitors.
• The fallout from the cyberattack of Change Healthcare continues, as yet another group is demanding ransom from UnitedHealth Group, Change’s owner. UnitedHealth said in a statement this week that the records of “a substantial portion of America” may be involved in the breach.

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

Julie Rovner: NBC News’ “Women Are Less Likely To Die When Treated by Female Doctors, Study Suggests,” by Liz Szabo.  

Alice Miranda Ollstein: States Newsroom’s “Loss of Federal Protection in Idaho Spurs Pregnant Patients To Plan for Emergency Air Transport,” by Kelcie Moseley-Morris.  

Tami Luhby: The Associated Press’ “Mississippi Lawmakers Haggle Over Possible Medicaid Expansion as Their Legislative Session Nears End,” by Emily Wagster Pettus.  

Joanne Kenen: States Newsroom’s “Missouri Prison Agency To Pay $60K for Sunshine Law Violations Over Inmate Death Records,” by Rudi Keller.  

Also mentioned on this week’s podcast:

• American Economic Review’s “Is There Too Little Antitrust Enforcement in the U.S. Hospital Sector?” by Zarek Brot-Goldberg, Zack Cooper, Stuart Craig, and Lev Klarnet.
• KFF Health News’ “Medical Providers Still Grappling With UnitedHealth Cyberattack: ‘More Devastating Than Covid,” by Samantha Liss.

Credits Francis Ying Audio producer Emmarie Huetteman Editor

To hear all our podcasts, click here.

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

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New technologies are making it easier for companies to fix prices and discriminate against individual consumers, the Biden administration’s top consumer watchdog said Tuesday.

Algorithms make it possible for companies to fix prices without explicitly coordinating with one another, posing a new test for regulators policing the market, said Lina Khan, chair of the Federal Trade Commission, during a media event hosted by KFF.

“I think we could be entering a somewhat novel era of pricing,” Khan told reporters.

Khan is regarded as one of the most aggressive antitrust regulators in recent U.S. history, and she has paid particular attention to the harm that technological advances can pose to consumers. Antitrust regulators at the FTC and the Justice Department set a record for merger challenges in the fiscal year that ended Sept. 30, 2022, according to Bloomberg News.

Last year, the FTC successfully blocked biotech company Illumina’s over $7 billion acquisition of cancer-screening company Grail. The FTC, Justice Department, and Health and Human Services Department launched a website on April 18, healthycompetition.gov, to make it easier for people to report suspected anticompetitive behavior in the health care industry.

The American Hospital Association, the industry’s largest trade group, has often criticized the Biden administration’s approach to antitrust enforcement. In comments in September on proposed guidance the FTC and Justice Department published for companies, the AHA said that “the guidelines reflect a fundamental hostility to mergers.”

Price fixing removes competition from the market and generally makes goods and services more expensive. The agency has argued in court filings that price fixing “is still illegal even if you are achieving it through an algorithm,” Khan said. “There’s no kind of algorithmic exemption to the antitrust laws.”

By simply using the same algorithms to set prices, companies can effectively charge the same “even if they’re not, you know, getting in a back room and kind of shaking hands and setting a price,” Khan said, using the example of residential property managers.

Khan said the commission is also scrutinizing the use of artificial intelligence and algorithms to set prices for individual consumers “based on all of this particular behavioral data about you: the websites you visited, you know, who you had lunch with, where you live.”

And as health care companies change the way they structure their businesses to maximize profits, the FTC is changing the way it analyzes behavior that could hurt consumers, Khan said.

Hiring people who can “help us look under the hood” of some inscrutable algorithms was a priority, Khan said. She said it’s already paid off in the form of legal actions “that are only possible because we had technologists on the team helping us figure out what are these algorithms doing.”

Traditionally, the FTC has policed health care by challenging local or regional hospital mergers that have the potential to reduce competition and raise prices. But consolidation in health care has evolved, Khan said.

Mergers of systems that don’t overlap geographically are increasing, she said. In addition, hospitals now often buy doctor practices, while pharmacy benefit managers start their own insurance companies or mail-order pharmacies — or vice versa — pursuing “vertical integration” that can hurt consumers, she said.

The FTC is hearing increasing complaints “about how these firms are using their monopoly power” and “exercising it in ways that’s resulting in higher prices for patients, less service, as well as worse conditions for health care workers,” Khan said.

Policing Noncompetes

Khan said she was surprised at how many health care workers responded to the commission’s recent proposal to ban “noncompete” clauses — agreements that can prevent employees from moving to new jobs. The FTC issued its final rule banning the practice on Tuesday. She said the ban was aimed at low-wage industries like fast food but that many of the comments in favor of the FTC’s plan came from health professions.

Health workers say noncompete agreements are “both personally devastating and also impeded patient care,” Khan said.

In some cases, doctors wrote that their patients “got really upset because they wanted to stick with me, but my hospital was saying I couldn’t,” Khan said. Some doctors ended up commuting long distances to prevent the rest of their families from having to move after they changed jobs, she said.

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The Biden administration finalized nursing home staffing rules Monday that will require thousands of them to hire more nurses and aides — while giving them years to do so.

The new rules from the Centers for Medicare & Medicaid Services are the most substantial changes to federal oversight of the nation’s roughly 15,000 nursing homes in more than three decades. But they are less stringent than what patient advocates said was needed to provide high-quality care.

Spurred by disproportionate deaths from covid-19 in long-term care facilities, the rules aim to address perennially sparse staffing that can be a root cause of missed diagnoses, severe bedsores, and frequent falls.

“For residents, this will mean more staff, which means fewer ER visits potentially, more independence,” Vice President Kamala Harris said while meeting with nursing home workers in La Crosse, Wisconsin. “For families, it’s going to mean peace of mind in terms of your loved one being taken care of.”

When the regulations are fully enacted, 4 in 5 homes will need to augment their payrolls, CMS estimated. But the new standards are likely to require slight if any improvements for many of the 1.2 million residents in facilities that are already quite close to or meet the minimum levels.

“Historically, this is a big deal, and we’re glad we have now established a floor,” Blanca Castro, California’s long-term care ombudsman, said in an interview. “From here we can go upward, recognizing there will be a lot of complaints about where we are going to get more people to fill these positions.”

The rules primarily address staffing levels for three types of nursing home workers. Registered nurses, or RNs, are the most skilled and responsible for guiding overall care and setting treatment plans. Licensed practical nurses, sometimes called licensed vocational nurses, work under the direction of RNs and perform routine medical care such as taking vital signs. Certified nursing assistants are supposed to be the most plentiful and help residents with daily activities like going to the bathroom, getting dressed, and eating.

While the industry has increased wages by 27% since February 2020, homes say they are still struggling to compete against better-paying work for nurses at hospitals and at retail shops and restaurants for aides. On average, nursing home RNs earn $40 an hour, licensed practical nurses make $31 an hour, and nursing assistants are paid $19 an hour, according to the most recent data from the Bureau of Labor Statistics.

CMS estimated the rules will ultimately cost $6 billion annually, but the plan omits any more payments from Medicare or Medicaid, the public insurers that cover most residents’ stays — meaning additional wages would have to come out of owners’ pockets or existing facility budgets.

The American Health Care Association, which represents the nursing home industry, called the regulation “an unreasonable standard” that “creates an impossible task for providers” amid a persistent worker shortage nationwide.

“This unfunded mandate doesn’t magically solve the nursing crisis,” the association’s CEO, Mark Parkinson, said in a statement. Parkinson said the industry will keep pressing Congress to overturn the regulation.

Richard Mollot, executive director of the Long Term Care Community Coalition, a New York City-based advocacy nonprofit, said “it is hard to call this a win for nursing home residents and families” given that the minimum levels were below what studies have found to be ideal.

The plan was welcomed by labor unions that represent nurses — and whom President Joe Biden is counting on for support in his reelection campaign. Service Employees International Union President Mary Kay Henry called it a “long-overdue sea change.” This political bond was underscored by the administration’s decision to have Harris announce the rule with SEIU members in Wisconsin, a swing state.

The new rules supplant the vague federal mandate that has been in place since the 1980s requiring nursing homes to have “sufficient” staffing to meet residents’ needs. In practice, inspectors rarely categorized inadequate staffing as a serious infraction resulting in possible penalties, federal records show.

Starting in two years, most homes must provide an average of at least 3.48 hours of daily care per resident. About 6 in 10 nursing homes are already operating at that level, a KFF analysis found.

The rules give homes breathing room before they must comply with more specific requirements. Within three years, most nursing homes will need to provide daily RN care of at least 0.55 hours per resident and 2.45 hours from aides.

CMS also mandated that within two years an RN must be on duty at all times in case of a patient crisis on weekends or overnight. Currently, CMS requires at least eight consecutive hours of RN presence each day and a licensed nurse of any level on duty around the clock. An inspector general report found that nearly a thousand nursing homes didn’t meet those basic requirements.

Nursing homes in rural areas will have longer to staff up. Within three years, they must meet the overall staffing numbers and the round-the-clock RN requirement. CMS’ rule said rural homes have four years to achieve the RN and nurse aide thresholds, although there was some confusion within CMS, as its press materials said rural homes would have five years.

Under the new rules, the average nursing home, which has around 100 residents, would need to have at least two RNs working each day, and at least 10 or 11 nurse aides, the administration said. Homes could meet the overall requirements through two more workers, who could be RNs, vocational nurses, or aides.

Homes can get a hardship exemption from the minimums if they are in regions with low populations of nurses or aides and demonstrate good-faith efforts to recruit.

Democrats praised the rules, though some said the administration did not go nearly far enough. Rep. Lloyd Doggett (D-Texas), the ranking member of the House Ways and Means Health Subcommittee, said the changes were “modest improvements” but that “much more is needed to ensure sufficient care and resident safety.” A Republican senator from Nebraska, Deb Fischer, said the rule would “devastate nursing homes across the country and worsen the staffing shortages we are already facing.”

Advocates for nursing home residents have been pressing CMS for years to adopt a higher standard than what it ultimately settled on. A CMS-commissioned study in 2001 found that the quality of care improved with increases of staff up to a level of 4.1 hours per resident per day — nearly a fifth higher than what CMS will require. The consultants CMS hired in preparing its new rules did not incorporate the earlier findings in their evaluation of options.

CMS said the levels it endorsed were more financially feasible for homes, but that assertion didn’t quiet the ongoing battle about how many people are willing to work in homes at current wages and how financially strained homes owners actually are.

“If states do not increase Medicaid payments to nursing homes, facilities are going to close,” said John Bowblis, an economics professor and research fellow with the Scripps Gerontology Center at Miami University. “There aren’t enough workers and there are shortages everywhere. When you have a 3% to 4% unemployment rate, where are you going to get people to work in nursing homes?”

Researchers, however, have been skeptical that all nursing homes are as broke as the industry claims or as their books show. A study published in March by the National Bureau of Economic Research estimated that 63% of profits were secretly siphoned to owners through inflated rents and other fees paid to other companies owned by the nursing homes’ investors.

Charlene Harrington, a professor emeritus at the nursing school of the University of California-San Francisco, said: “In their unchecked quest for profits, the nursing home industry has created its own problems by not paying adequate wages and benefits and setting heavy nursing workloads that cause neglect and harm to residents and create an unsatisfactory and stressful work environment.”

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Two months after a cyberattack on a UnitedHealth Group subsidiary halted payments to some doctors, medical providers say they’re still grappling with the fallout, even though UnitedHealth told shareholders on Tuesday that business is largely back to normal.

“We are still desperately struggling,” said Emily Benson, a therapist in Edina, Minnesota, who runs her own practice, Beginnings & Beyond. “This was way more devastating than covid ever was.”

Change Healthcare, a business unit of the Minnesota-based insurance giant UnitedHealth Group, controls a digital network so vast it processes nearly 1 in 3 U.S. patient records each year. The network is a critical conduit for shuttling information between most of the nation’s insurance companies and medical providers, who submit claims through it to get paid for treating patients.

For Benson, the cyberattack continues to significantly disrupt her business and her ability to pay her seven other clinicians.

Before the hack brought down the system, an insurance company would process a provider’s claim, then send a type of receipt known as an “electronic remittance,” which details the amount the provider was paid and whether the claim was denied. Without it, providers don’t know if they were paid correctly or how much to bill patients. 

Now, instead of automatically handling those receipts digitally, some insurers must send forms in the mail. The forms require manual entry, which Benson said is a time-consuming process because it requires her to match up service dates and details to divvy up pay among her clinicians. And from at least one insurer, she said, she has yet to receive any remittances.  

“I’m holding on to my sanity by a thread,” Benson said.

The situation is so dire, Alex Shteynshlyuger, a urologist who owns a practice in New York City, said he had to transfer money from his personal accounts to pay his office bills.  

“Look, I am freaking out,” Shteynshlyuger said. “Everyone is freaking out. We are like monkeys in a cage. We can’t really do anything about it.”

Roughly 30% of his claims were routed through Change’s platform. Except for Medicare and certain Blue Cross plans, he said, he has been unable to submit claims or receive payment from any insurers.

The company is encouraging struggling providers to reach out to the company directly via its website, said Tyler Mason, vice president of communications for UnitedHealth Group.

“I don’t think we’ve had a single provider that hasn’t been helped that’s contacted us.” As part of that help, Mason said, UnitedHealth has sent providers $7 billion so far.

Ever since the February cyberattack forced UnitedHealth to disconnect its Change platform, the company has been working “day and night to restore services” and has made “substantial progress,” UnitedHealth CEO Andrew Witty told shareholders April 16. 

“We see a fairly normal claims receipts and payments flow going on at this point,” Chief Financial Officer John Rex said during the shareholder call. “But we’ll really want to be careful on that because we know there are certain care providers out there that may have been left out of it.”

Rex said the company expects full operations to resume next year.

The company reported that the hacking has already cost it $870 million and that leaders expect the final tally to total at least $1 billion this year. To put that in perspective, the company reported $99.8 billion in revenue for the first quarter of 2024, an 8.6% increase over that period last year.

Meanwhile, the House Energy and Commerce Health Subcommittee held a hearing April 16 seeking answers on the severity and damage the cyberattack caused to the nation’s health system.

Subcommittee chair Brett Guthrie (R-Ky.) said a provider in his hometown is still grappling with the fallout from the attack and losing staff because they can’t make payroll. Providers “still haven’t been made whole,” Guthrie said.

Rep. Frank Pallone Jr. (D-N.J.) voiced concern that a “single point of failure” reverberated around the country, disrupting patients’ access and providers’ financial stability.

Lawmakers expressed frustration that UnitedHealth failed to send a representative to the Capitol to answer their questions. The committee had sent Witty a list of detailed questions ahead of the hearing but was still awaiting answers.

As providers wait, too, they are trying to cover the gaps. To pay her practice’s bills, Benson said, she had to take out a nearly $40,000 loan — from a division of UnitedHealth.

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For the past year, police Detective Tim Lillard has spent most of his waking hours unofficially investigating his wife’s death.

The question has never been exactly how Ann Picha-Lillard died on Nov. 19, 2022: She succumbed to respiratory failure after an infection put too much strain on her weakened lungs. She was 65.

For Tim Lillard, the question has been why.

Lillard had been in the hospital with his wife every day for a month. Nurses in the intensive care unit had told him they were short-staffed, and were constantly rushing from one patient to the next.

Lillard tried to pitch in where he could: brushing Ann’s shoulder-length blonde hair or flagging down help when her tracheostomy tube gurgled — a sign of possible respiratory distress.

So the day he walked into the ICU and saw staff members huddled in Ann’s room, he knew it was serious. He called the couple’s adult children: “It’s Mom,” he told them. “Come now.”

All he could do then was sit on Ann’s bed and hold her hand, watching as staff members performed chest compressions, desperately trying to save her life.

A minute ticked by. Then another. Lillard’s not sure how long the CPR continued — long enough for the couple’s son to arrive and take a seat on the other side of Ann’s bed, holding her other hand.

Finally, the intensive care doctor called it and the team stopped CPR. Time of death: 12:37 p.m.

Lillard didn’t know what to do in a world without Ann. They had been married almost 25 years. “We were best friends,” he said.

Just days before her death, nurses had told Lillard that Ann could be discharged to a rehabilitation center as soon as the end of the week. Then, suddenly, she was gone. Lillard didn’t understand what had happened.

Lillard said he now believes that overwhelmed, understaffed nurses hadn’t been able to respond in time as Ann’s condition deteriorated. And he has made it his mission to fight for change, joining some nursing unions in a push for mandatory ratios that would limit the number of patients in a nurse’s care. “I without a doubt believe 100% Ann would still be here today if they had staffing levels, mandatory staffing levels, especially in ICU,” Lillard said.

Last year, Oregon became the second state after California to pass hospital-wide nurse ratios that limit the number of patients in a nurse’s care. Michigan, Maine, and Pennsylvania are now weighing similar legislation.

But supporters of mandatory ratios are going up against a powerful hospital industry spending millions of dollars to kill those efforts. And hospitals and health systems say any staffing ratio regulations, however well-intentioned, would only put patients in greater danger.

Putting Patients at Risk

By next year, the United States could have as many as 450,000 fewer nurses than it needs, according to one estimate. The hospital industry blames covid-19 burnout, an aging workforce, a large patient population, and an insufficient pipeline of new nurses entering the field.

But nursing unions say that’s not the full story. There are now 4.7 million registered nurses in the country, more than ever before, with an estimated 130,000 nurses having entered the field from 2020 to 2022.

The problem, the unions say, is a hospital industry that’s been intentionally understaffing their units for years in order to cut costs and bolster profits. The unions say there isn’t a shortage of nurses but a shortage of nurses willing to work in those conditions.

The nurse staffing crisis is now affecting patient care. The number of Michigan nurses who say they know of a patient who has died because of understaffing has nearly doubled in recent years, according to a Michigan Nurses Association survey last year.

Just months before Ann Picha-Lillard’s death, nurses and doctors at the health system where she died had asked the Michigan attorney general to investigate staffing cuts they believed were leading to dangerous conditions, including patient deaths, according to The Detroit News.

But Lillard didn’t know any of that when he drove his wife to the hospital in October 2022. She had been feeling short of breath for a few weeks after she and Lillard had mild covid infections. They were both vaccinated, but Ann was immunocompromised. She suffered from rheumatoid arthritis, a condition that had also caused scarring in her lungs.

To be safe, doctors at DMC Huron Valley-Sinai Hospital wanted to keep Ann for observation. After a few days in the facility, she developed pneumonia. Doctors told the couple that Ann needed to be intubated. Ann was terrified but Lillard begged her to listen to the doctors. Tearfully, she agreed.

With Ann on a ventilator in the ICU, it seemed clear to Lillard that nurses were understaffed and overwhelmed. One nurse told him they had been especially short-staffed lately, Lillard said.

“The alarms would go off for the medications, they’d come into the room, shut off the alarm when they get low, run to the medication room, come back, set them down, go to the next room, shut off alarms,” Lillard recalled. “And that was going on all the time.”

Lillard felt bad for the nurses, he said. “But obviously, also for my wife. That’s why I tried doing as much as I could when I was there. I would comb her hair, clean her, just keep an eye on things. But I had no idea what was really going on.”

Finally, Ann’s health seemed to be stabilizing. A nurse told Lillard they’d be able to discharge Ann, possibly by the end of that week.

By Nov. 17, Ann was no longer sedated and she cried when she saw Lillard and her daughter. Still unable to speak, she tried to mouth words to her husband “but we couldn’t understand what she was saying,” Lillard said.

The next day, Lillard went home feeling hopeful, counting down the days until Ann could leave the hospital.

Less than 24 hours later, Ann died.

Lillard couldn’t wrap his head around how things went downhill so fast. Ann’s underlying lung condition, the infection, and her weakened state could have proved fatal in the best of circumstances. But Lillard wanted to understand how Ann had gone from nearly discharged to dying, seemingly overnight.

He turned his dining room table into a makeshift office and started with what he knew. The day Ann died, he remembered her medical team telling him that her heart rate had spiked and she had developed another infection the night before. Lillard said he interviewed two DMC Huron Valley-Sinai nurse administrators, and had his own doctor look through Ann’s charts and test results from the hospital. “Everybody kept telling me: sepsis, sepsis, sepsis,” he said.

Sepsis is when an infection triggers an extreme reaction in the body that can cause rapid organ failure. It’s one of the leading causes of death in U.S. hospitals. Some experts say up to 80% of sepsis deaths are preventable, while others say the percentage is far lower.

Lives can be saved when sepsis is caught and treated fast, which requires careful attention to small changes in vital signs. One study found that for every additional patient a nurse had to care for, the mortality rate from sepsis increased by 12%.

Lillard became convinced that had there been more nurses working in the ICU, someone could have caught what was happening to Ann.

“They just didn’t have the time,” he said.

DMC Huron Valley-Sinai’s director of communications and media relations, Brian Taylor, declined a request for comment about the 2022 staffing complaint to the Michigan attorney general.

Following the Money

When Lillard asked the hospital for copies of Ann’s medical records, DMC Huron Valley-Sinai told him he’d have to request them from its parent company in Texas.

Like so many hospitals in recent years, the Lillards’ local health system had been absorbed by a series of other corporations. In 2011, the Detroit Medical Center health system was bought for $1.5 billion by Vanguard Health Systems, which was backed by the private equity company Blackstone Group.

Two years after that, in 2013, Vanguard itself was acquired by Tenet Healthcare, a for-profit company based in Dallas that, according to its website, operates 480 ambulatory surgery centers and surgical hospitals, 52 hospitals, and approximately 160 additional outpatient centers.

As health care executives face increasing pressure from investors, nursing unions say hospitals have been intentionally understaffing nurses to reduce labor costs and increase revenue. Also, insurance reimbursements incentivize keeping nurse staffing levels low. “Hospitals are not directly reimbursed for nursing services in the same way that a physician bills for their services,” said Karen Lasater, an associate professor of nursing in the Center for Health Outcomes and Policy Research at the University of Pennsylvania. “And because hospitals don’t perceive nursing as a service line, but rather a cost center, they think about nursing as: How can we reduce this to the lowest denominator possible?” she said.

Lasater is a proponent of mandatory nurse ratios. “The nursing shortage is not a pipeline problem, but a leaky bucket problem,” she said. “And the solutions to this crisis need to address the root cause of the issue, which is why nurses are saying they’re leaving employment. And it’s rooted in unsafe staffing. It’s not safe for the patients, but it’s also not safe for nurses.”

A Battle Between Hospitals and Unions

In November, almost one year after Ann’s death, Lillard told a room of lawmakers at the Michigan State Capitol that he believes the Safe Patient Care Act could save lives. The health policy committee in the Michigan House was holding a hearing on the proposed act, which would limit the amount of mandatory overtime a nurse can be forced to work, and require hospitals to make their staffing levels available to the public.

Most significantly, the bills would require hospitals to have mandatory, minimum nurse-to-patient ratios. For example: one nurse for every patient in the ICU; one for every three patients in the emergency room; a nurse for triage; and one nurse for every four postpartum birthing patients and well-baby care.

Efforts to pass mandatory ratio laws failed in Washington and Minnesota last year after facing opposition from the hospital industry. In Minnesota, the Minnesota Nurses Association accused the Mayo Clinic of using “blackmail tactics”: Mayo had told lawmakers it would pull billions of dollars in investment from the state if mandatory ratio legislation passed. Soon afterward, lawmakers removed nurse ratios from the legislation.

While Lillard waited for his turn to speak to Michigan lawmakers about the Safe Patient Care Act in November, members of the Michigan Nurses Association, which says it represents some 13,000 nurses, told lawmakers that its units were dangerously understaffed. They said critical care nurses were sometimes caring for up to 11 patients at a time.

“Last year I coded someone in an ICU for 10 minutes, all alone, because there was no one to help me,” said the nurses association president and registered nurse Jamie Brown, reading from another nurse’s letter.

“I have been left as the only specially trained nurse to take care of eight babies on the unit: eight fragile newborns,” said Carolyn Clemens, a registered nurse from the Grand Blanc area of Michigan.

Nikia Parker said she has left full-time emergency room nursing, a job she believes is her calling. After her friend died in the hospital where she worked, she was left wondering whether understaffing may have contributed to his death.

“If the Safe Patient Care Act passed, and we have ratios, I’m one of those nurses who would return to the bedside full time,” Parker told lawmakers. “And so many of my co-workers who have left would join me.”

But not all nurses agree that mandatory ratios are a good idea. 

While the American Nurses Association supports enforceable ratios as an “essential approach,” that organization’s Michigan chapter does not, saying there may not be enough nurses in the state to satisfy the requirements of the Safe Patient Care Act.

For some lawmakers, the risk of collateral damage seems too high. State Rep. Graham Filler said he worries that mandating ratios could backfire.

“We’re going to severely hamper health care in the state of Michigan. I’m talking closed wards because you can’t meet the ratio in a bill. The inability for a hospital to treat an emergent patient. So it feels kind of to me like a gamble we’re taking,” said Filler, a Republican.

Michigan hospitals are already struggling to fill some 8,400 open positions, according to the Michigan Health & Hospital Association. That association says that complying with the Safe Patient Care Act would require hiring 13,000 nurses.

Every major health system in the state signed a letter opposing mandatory ratios, saying it would force them to close as many as 5,100 beds.

Lillard watched the debate play out in the hearing. “That’s a scare tactic, in my opinion, where the hospitals say we’re going to have to start closing stuff down,” he said.

He doesn’t think legislation on mandatory ratios — which are still awaiting a vote in the Michigan House’s health policy committee — are a “magic bullet” for such a complex, national problem. But he believes they could help.

“The only way these hospitals and the administrations are gonna make any changes, and even start moving towards making it better, is if they’re forced to,” Lillard said.

Seated in the center of the hearing room in Lansing, next to a framed photo of Ann, Lillard’s hands shook as he recounted those final minutes in the ICU.

“Please take action so that no other person or other family endures this loss,” he said. “You can make a difference in saving lives.”

Grief is one thing, Lillard said, but it’s another thing to be haunted by doubts, to worry that your loved one’s care was compromised before they ever walked through the hospital doors. What he wants most, he said, is to prevent any other family from having to wonder, “What if?”

This article is from a partnership that includes Michigan Public, 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.

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SAN FRANCISCO — Chinese Hospital, located in the heart of this city’s legendary Chinatown, struggles with many of the same financial and demographic challenges that plague small independent hospitals in underserved areas across the country.

Many of its patients are aging Chinese speakers with limited incomes who are reliant on Medicare and Medi-Cal, which pay less than commercial insurance and often don’t fully cover provider costs. And due to an arcane federal rule, Chinese Hospital receives a lower rate of reimbursement than many other hospitals that treat a large number of low-income patients. Add the high cost of labor and supplies in this post-pandemic world, and it’s not hard to see why the hospital lost $20 million over the past two years and tapped a nearly $10.4 million loan from the state’s distressed hospital loan fund.

Yet the 88-bed hospital has strong ties to the University of California-San Francisco and the city’s public health department. And it gets support from businesses, charities, and the surrounding community. For Jian Zhang, 58, the hospital’s CEO since 2017, fundraising is like breathing.

“I feel like it’s a full-time job for me,” said Zhang, who arrived in San Francisco from Guangzhou, China, as an international student in 1990, earned a nursing doctorate from the University of San Francisco, and has remained in the Bay Area.

Revenue from fundraising and other services have provided a big boost, helping the hospital significantly offset what it lost on patient care in 2022, according to the hospital and state data. By contrast, Madera Community Hospital and Beverly Hospital were far less able to do so. Those hospitals, which also serve low-income populations with many patients on government health care programs, filed for bankruptcy last year.

Chinese Hospital has its roots in a medicinal dispensary, founded in 1899 to provide health care for Chinese immigrants who were effectively excluded from mainstream medical facilities. The hospital itself opened in 1925, and a second building was added next door in 1979. In 2016, a new building replaced the original hospital.

Today, Chinese Hospital includes those two buildings plus five outpatient clinics offering Eastern and Western medicine, spread out across San Francisco and neighboring San Mateo County. Through partnerships, Chinese Hospital has been able to offer specialty services to its patients, including eye surgery, palliative care, and a stroke center. And $10 million in grants it received from the state last year will help build a subacute unit, which is for fragile patients who still need nursing and monitoring following a hospital stay.

In an interview with KFF Health News senior correspondent Bernard J. Wolfson, Zhang discussed the challenges facing small independent hospitals, including Chinese Hospital, and offered her vision for its future. The following Q&A has been edited for length and clarity:

Q: What are some of the main challenges your hospital faces?

We are facing all the challenges other hospitals are facing, especially the covid pandemic and its associated negative impact — the physician shortage and workforce shortage, the labor cost increases. But as a small community hospital, we don’t have a lot of reserve money. It’s hard to make ends meet.

That is a huge challenge because of the low reimbursement rate. We serve more than 80% Medicare and Medi-Cal patients.

Q: What are some specific challenges of serving a largely Chinese population?

In this market, with the workforce shortage, and especially after the pandemic, it’s even harder to recruit bilingual physicians, and other bilingual staff.

And culturally, Chinese patients, when they are sick, need to drink soup for healing or eat certain other foods for healing. You can’t be providing sandwiches and salads. They won’t eat that. So our kitchen has to provide Chinese food, has to boil soup, and then we have to cook different food for our patients who are non-Chinese.

Q: Are you concerned about the state’s budget shortfall?

Absolutely. We all were expecting that Medi-Cal would increase rates. We have been pushing that for many years. But if it’s not going to happen, a lot of our programs we probably won’t be able to do. I am very concerned about it.

Q: Chinese Hospital has its own health plan, and you said 40% to 50% of your patients are members of it. How has that helped?

It’s like Kaiser Permanente. You have your own members, and you manage them. You want your patients to be in outpatient. So you take care of them, keep them healthy, so they don’t need to come to the hospital for acute care. That’s how you save money.

Q: And I imagine that getting fixed monthly payments — capitation payments — for a large proportion of your patients also helps?

Definitely, capitation payments help. Especially during the pandemic. Think about it. If you didn’t have capitation payments, when procedures were canceled, you didn’t have income.

Q: What else has helped you weather the storm?

We have partnerships with San Francisco’s Department of Public Health and UCSF. During the pandemic, we took overflow patients from the city, so we didn’t have to lay off a lot of people. We signed a contract with the city to open up the second floor of our hospital to take overflow patients from Zuckerberg San Francisco General hospital.

Q: You also have strong fundraising activity.

We do have strong community support. The hospital is not just a hospital to me. It’s really part of our history. In the past, it was the only place [Chinese people] could go. Wherever I went, to a conference, for example, somebody would raise their hand and say, “Oh, I was born at Chinese Hospital” or “My grandfather was born at Chinese Hospital.” It is really, really deeply rooted in the community.

Q: What’s your vision for the future of the hospital?

Chinese Hospital is very important to the community, and I want to see it survive and thrive. But it definitely needs support from the government and from the community. Moving forward, we will continue to build on collaborations and partnerships.

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

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

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The Host Mary Agnes Carey KFF Health News @maryagnescarey Read Mary Agnes' stories.

Lawmakers in Washington this week held the first congressional hearing on the Change Healthcare cyberattack, a breach that sent shock waves through the health care system as payments for care ground to a halt and left some providers in financial trouble. Republicans and Democrats alike zeroed in on how big health care conglomerations — like Change’s parent company, UnitedHealth Group — are leaving patients vulnerable.

And nearly 1 in 4 adults who lost Medicaid coverage in the past year are now uninsured, according to a new KFF survey probing the effects of what’s known as the “unwinding” of enrollments in the government insurance program for low-income people since pandemic-era protections expired.

This week’s panelists are Mary Agnes Carey of KFF Health News, Jessie Hellmann of CQ Roll Call, Sarah Karlin-Smith of the Pink Sheet, and Lauren Weber of The Washington Post.

Panelists Jessie Hellmann CQ Roll Call @jessiehellmann Read Jessie's stories. Sarah Karlin-Smith Pink Sheet @SarahKarlin Read Sarah's stories. Lauren Weber The Washington Post @LaurenWeberHP Read Lauren's stories.

Among the takeaways from this week’s episode:

• Though the Change Healthcare hearing on Capitol Hill illuminated bipartisan agreement on the perils of vertical integration in health care, lawmakers did not agree on possible solutions. Addressing consolidation, however, could remedy issues in health care beyond cybersecurity.
• The KFF survey on the unwinding found that nearly half of those who lost coverage signed back up for Medicaid weeks or months later, a signal that those enrollees should never have been dropped in the first place. Even a temporary loss in health coverage can have serious, lingering consequences.
• Republicans in Arizona are grappling with the fallout from the state’s newly reinstated, Civil War-era abortion law — echoing recent problems for Alabama Republicans after a state Supreme Court ruling upended access to in vitro fertilization there. Softened stances from conservative hard-liners like Senate candidate Kari Lake point to the potential negative consequences for the party in a critical election year.
• And the Centers for Disease Control and Prevention released new information about the current measles outbreak, revealing that many of those sickened are children, as well as adults who are unvaccinated or whose vaccination status is unknown.

Also this week, Julie Rovner, KFF Health News’ chief Washington correspondent, interviews Caroline Pearson of the Peterson Health Technology Institute.

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’ “When Rogue Brokers Switch People’s ACA Policies, Tax Surprises Can Follow,” by Julie Appleby. 

Jessie Hellmann: Tampa Bay Times’ “Vulnerable Florida Patients Scramble After Abrupt Medicaid Termination,” by Teghan Simonton. 

Sarah Karlin-Smith: Stat’s “Grocers Are Pushing Legislation They Claim Would Enhance Food Safety. Advocates Say It Would Gut FDA Rules,” by Nicholas Florko. 

Lauren Weber: The New York Times’ “Chinese Company Under Congressional Scrutiny Makes Key U.S. Drugs,” by Christina Jewett. 

Also mentioned on this week’s podcast:

• KFF Health News’ “Nearly 1 in 4 Adults Dumped From Medicaid Are Now Uninsured, Survey Finds,” by Phil Galewitz.
• The New York Times’ “Under Pressure From Trump, Arizona Republicans Weigh Response to 1864 Abortion Ban,” by Chris Cameron.

Credits Francis Ying Audio producer Emmarie Huetteman Editor

To hear all our podcasts, click here.

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

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

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Carrie Lester looks forward to the phone call every Thursday from her doctors’ medical assistant, who asks how she’s doing and if she needs prescription refills. The assistant counsels her on dealing with anxiety and her other health issues.

Lester credits the chats for keeping her out of the hospital and reducing the need for clinic visits to manage chronic conditions including depression, fibromyalgia, and hypertension.

“Just knowing someone is going to check on me is comforting,” said Lester, 73, who lives with her dogs, Sophie and Dolly, in Independence, Kansas.

At least two-thirds of Medicare enrollees have two or more chronic health conditions, federal data shows. That makes them eligible for a federal program that, since 2015, has rewarded doctors for doing more to manage their health outside office visits.

But while early research found the service, called Chronic Care Management, reduced emergency room and in-patient hospital visits and lowered total health spending, uptake has been sluggish.

Federal data from 2019 shows just 4% of potentially eligible enrollees participated in the program, a figure that appears to have held steady through 2023, according to a Mathematica analysis. About 12,000 physicians billed Medicare under the CCM mantle in 2021, according to the latest Medicare data analyzed by KFF Health News. (The Medicare data includes doctors who have annually billed CCM at least a dozen times.)

By comparison, federal data shows about 1 million providers participate in Medicare.

Even as the strategy has largely failed to live up to its potential, thousands of physicians have boosted their annual pay by participating, and auxiliary for-profit businesses have sprung up to help doctors take advantage of the program. The federal data showed about 4,500 physicians received at least $100,000 each in CCM pay in 2021.

Through the CCM program, Medicare pays to develop a patient care plan, coordinate treatment with specialists, and regularly check in with beneficiaries. Medicare pays doctors a monthly average of $62 per patient, for 20 minutes of work with each, according to companies in the business.

Without the program, providers often have little incentive to spend time coordinating care because they can’t bill Medicare for such services.

Health policy experts say a host of factors limit participation in the program. Chief among them is that it requires both doctors and patients to opt in. Doctors may not have the capacity to regularly monitor patients outside office visits. Some also worry about meeting the strict Medicare documentation requirements for reimbursement and are reluctant to ask patients to join a program that may require a monthly copayment if they don’t have a supplemental policy.

“This program had potential to have a big impact,” said Kenneth Thorpe, an Emory University health policy expert on chronic diseases. “But I knew it was never going to work from the start because it was put together wrong.”

He said most doctors’ offices are not set up for monitoring patients at home. “This is very time-intensive and not something physicians are used to doing or have time to do,” Thorpe said.

For patients, the CCM program is intended to expand the type of care offered in traditional, fee-for-service Medicare to match benefits that — at least in theory — they may get through Medicare Advantage, which is administered by private insurers.

But the CCM program is open to both Medicare and Medicare Advantage beneficiaries.

The program was also intended to boost pay to primary care doctors and other physicians who are paid significantly less by Medicare than specialists, said Mark Miller, a former executive director of the Medicare Payment Advisory Commission, which advises Congress. He’s currently an executive vice president of Arnold Ventures, a philanthropic organization focused on health policy. (The organization has also provided funding for KFF Health News.)

Despite the allure of extra money, some physicians have been put off by the program’s upfront costs.

“It may seem like easy money for a physician practice, but it is not,” said Namirah Jamshed, a physician at UT Southwestern Medical Center in Dallas.

Jamshed said the CCM program was cumbersome to implement because her practice was not used to documenting time spent with patients outside the office, a challenge that included finding a way to integrate the data into electronic health records. Another challenge was hiring staff to handle patient calls before her practice started getting reimbursed by the program.

Only about 10% of the practice’s Medicare patients are enrolled in CCM, she said.

Jamshed said her practice has been approached by private companies looking to do the work, but the practice demurred out of concerns about sharing patients’ health information and the cost of retaining the companies. Those companies can take more than half of what Medicare pays doctors for their CCM work.

Physician Jennifer Bacani McKenney, who runs a family medicine practice in Fredonia, Kansas, with her father — where Carrie Lester is a patient — said the CCM program has worked well.

She said having a system to keep in touch with patients at least once a month has reduced their use of emergency rooms — including for some who were prone to visits for nonemergency reasons, such as running out of medication or even feeling lonely. The CCM funding enables the practice’s medical assistant to call patients regularly to check in, something it could not afford before.

For a small practice, having a staffer who can generate extra revenue makes a big difference, McKenney said.

While she estimates about 90% of their patients would qualify for the program, only about 20% are enrolled. One reason is that not everyone needs or wants the calls, she said.

While the program has captured interest among internists and family medicine doctors, it has also paid out hundreds of thousands of dollars to specialists, such as those in cardiology, urology, and gastroenterology, the KFF Health News analysis found. Primary care doctors are often seen as the ones who coordinate patient care, making the payments to specialists notable.

A federally funded study by Mathematica in 2017 found the CCM program saves Medicare $74 per patient per month, or $888 per patient per year — due mostly to a decreased need for hospital care.

The study quoted providers who were unhappy with attempts to outsource CCM work. “Third-party companies out there turn this into a racket,” the study cited one physician as saying, noting companies employ nurses who don’t know patients.

Nancy McCall, a Mathematica researcher who co-authored the 2017 study, said doctors are not the only resistance point. “Patients may not want to be bothered or asked if they are exercising or losing weight or watching their salt intake,” she said.

Still, some physician groups say it’s convenient to outsource the program.

UnityPoint Health, a large integrated health system based in Iowa, tried doing chronic care management on its own, but found it administratively burdensome, said Dawn Welling, the UnityPoint Clinic’s chief nursing officer.

For the past year, it has contracted with a Miami-based company, HealthSnap, to enroll patients, have its nurses make check-in calls each month, and help with billing. HealthSnap helps manage care for over 16,000 of UnityHealth’s Medicare patients — a small fraction of its Medicare patients, which includes those enrolled in Medicare Advantage.

Some doctors were anxious about sharing patient records and viewed the program as a sign they weren’t doing enough for patients, Welling said. But she said the program has been helpful, particularly to many enrollees who are isolated and need help changing their diet and other behaviors to improve health.

“These are patients who call the clinic regularly and have needs, but not always clinical needs,” Welling said.

Samson Magid, CEO of HealthSnap, said more doctors have started participating in the CCM program since Medicare increased pay in 2022 for 20 minutes of work, to $62 from $41, and added billing codes for additional time.

To help ensure patients pick up the phone, caller ID shows HealthSnap calls as coming from their doctor’s office, not from wherever the company’s nurse might be located. The company also hires nurses from different regions so they may speak with dialects similar to those of the patients they work with, Magid said.

He said some enrollees have been in the program for three years and many could stay enrolled for life — which means they can bill patients and Medicare long-term.

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

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A pair of heart devices linked to hundreds of injuries and at least 14 deaths has received the FDA’s most serious recall, the agency announced Monday.

Related Article Patients Facing Death Are Opting for a Lifesaving Heart Device — But at What Risk?

The HeartMate 3 is considered the safest mechanical heart pump of its kind, but a federal database contains more than 4,500 reports in which the medical device may have caused or contributed to a patient’s death.

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The recall comes years after surgeons say they first noticed problems with the HeartMate II and HeartMate 3, manufactured by Thoratec Corp., a subsidiary of Abbott Laboratories. The devices are not currently being removed from the market. In an emailed response, Abbott said it had communicated the risk to customers this year.

The delayed action raises questions for some safety advocates about how and when issues with approved medical devices should be reported. The heart devices in question have been associated with thousands of reports of patients’ injuries and deaths, as described in a KFF Health News investigation late last year.

“Why doesn’t the public know?” said Sanket Dhruva, a cardiologist and an expert in medical device safety and regulation at the University of California-San Francisco. Though some surgeons may have been aware of issues, others, particularly those who do not implant the device frequently, may have been in the dark. “And their patients are suffering adverse events,” he said.

The recall involves a pair of mechanical pumps that help the heart pump blood when it can’t do so on its own. The devices, small enough to fit in the palm of a hand, are implanted in patients with end-stage heart failure who are waiting for a transplant or as a permanent solution when a transplant is not an option. The recall affects nearly 14,000 devices.

Amanda Hils, an FDA press officer, said the agency is working with Abbott to investigate the reported injuries and deaths and determine if further action is needed.

“To date, the number of deaths reported appears consistent with the adverse events observed in the initial clinical trial,” Hils said in an email.

According to the FDA’s recall notice, the devices can cause buildup of “biological material” that reduces their ability to help the heart circulate blood and keep patients alive. The buildup accumulates gradually and can appear two years or more after a device is implanted in a patient’s chest.

Doctors were advised to watch out for “low-flow alarms” on the devices and, if they do diagnose the obstruction, to either monitor the patient or perform surgery to implant a stent, release the blockage, or replace the pump. “Rates of outflow obstruction are low,” Abbott spokesperson Justin Paquette said in an email, adding that patients whose devices are functioning normally “have no reason for concern.”

A review of the FDA device database shows at least 130 reports related to HeartMate II or 3 that mention the complication reported by regulators. The earliest such report filed with the FDA dates to at least 2020, according to a KFF Health News review of the database.

Monday’s alert is the second Class 1 recall of a HeartMate device this year.

In January, Abbott issued an urgent “correction letter” to hospitals about a separate issue in which the HeartMate 3 unintentionally starts and stops due to the pump’s communication system, which cardiologists use to assess patients’ status. The FDA alerted the public in March.

In February, Abbott issued another urgent letter to hospitals about the blockage problem, asking them to inform physicians, complete and return an acknowledgment form, and pay attention to low-flow alarms on the device’s monitor that may indicate an obstruction. The company said in the letter that it is working on “a design solution” to prevent the blockages.

A study published in 2022 in the Journal of Thoracic and Cardiovascular Surgery reported the obstruction in about 3% of cases, though the incidence rate was higher the longer a patient had the device.

The only other Class 1 recall issued for the HeartMate 3 was in May 2018, when the company issued corrective action notices to hospitals and physicians warning that the graft line that carries blood from the pump to the aorta could twist and stop blood flow.

The FDA recall notice issued Monday includes additional guidance for physicians to diagnose the blockage using an algorithm to detect obstructions and, if needed, a CT angiogram to verify the cause.

At present, the HeartMate 3, which was first approved by the FDA in 2017, is the only medical option for many patients with end-stage heart failure and who do not qualify for a transplant. The HeartMate 3 has supplanted the HeartMate II, which received FDA approval in 2008.

If the new recall leads to the device being removed from the market, end-stage heart failure patients could have no options, said Francis Pagani, a cardiothoracic surgeon at the University of Michigan who also oversees a proprietary database of HeartMate II and HeartMate 3 implants.

If that happens, “we are in trouble,” Pagani said. “It would be devastating to the patients to not have this option. It’s not a perfect option — no pump ever is — but this is as good as it’s ever been.”

It’s not known precisely how many patients have received a HeartMate II or HeartMate 3 implant. That information is proprietary. The FDA recall notices show worldwide distribution of more than 22,000 HeartMate 3 devices and more than 2,200 of the HeartMate II.

The blockage complication may have gone unreported to the public for so long partly because physicians are not required to report adverse events to federal regulators, said Madris Kinard, a former FDA medical device official and founder of Device Events, a company that makes FDA device data more user-friendly for hospitals, law firms, and investors.

Only device manufacturers, device importers, and hospitals are required by law to report device-related injuries, deaths, and significant malfunctions to the FDA.

“If this is something physicians were aware of, but they weren’t mandated to report to the FDA,” Kinard said, “at what point does that communication between those two groups need to happen?”

Dhruva, the cardiologist, said he is looking for transparency from Abbott about what the company is doing to address the problem so he can have more thorough conversations with patients considering a HeartMate device.

“We’re going to expect to have some data saying, ‘Hey we created this fix, and this fix works, and it doesn’t cause a new problem.’ That’s what I want to know,” he said. “There’s just a ton more that I feel in the dark about, to be honest, and I’m sure that patients and their families do as well.”

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

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More than $4.3 billion in opioid settlement money has landed in the hands of city, county and state officials to date — with billions more on the way. But instead of using the cash to add desperately needed treatment, recovery and prevention services, some places are using it to replace existing funding.

Local officials say they’re trying to stretch tight budgets, especially in rural areas. But critics say it’s a lost opportunity to bolster responses to an ongoing addiction crisis and save lives.

“To think that replacing what you’re already spending with settlement funds is going to make things better — it’s not,” said Robert Kent, former general counsel for the Office of National Drug Control Policy. “Certainly, the spirit of the settlements wasn’t to keep doing what you’re doing. It was to do more.”

The debate is playing out in Scott County, Ind. The rural community made headlines in 2015 after intravenous drug use led to a massive HIV outbreak and then-Gov. Mike Pence (R) legalized syringe service programs. (The county has since shuttered its syringe program.) 

In 2022, the county received more than $570,000 in opioid settlement funds. It spent about 45 percent of that on salaries for its health director and emergency medical services staff, according to reports it filed with the state. The money usually budgeted for those salaries was freed to buy an ambulance and create a rainy-day fund for the health department.

In public meetings, Scott County leaders said they hoped to reimburse the departments for resources they dedicated to the HIV outbreak years ago. 

Their conversations echo the struggles of other rural counties, which have tight budgets in part because for years they poured money into combating the opioid crisis. Now they want to recoup some of those expenses.

But many families affected by addiction, recovery advocates, and legal and public health experts say that misses the point, that the settlements were aimed at helping the nation make progress against the overdose epidemic.

Thirteen states and Washington, D.C., have restricted substituting opioid settlement funds for existing government spending, according to state guides created by OpioidSettlementTracker.com and the public health organization Vital Strategies. A national set of principles created by Johns Hopkins University also advises against the practice, known as supplantation.

But it’s happening anyway. 

County commissioners in Blair County, Pa., used about $320,000 of settlement funds for a drug court that has been operating with other sources of money for more than two decades, according to a report the county filed with a state council overseeing settlement funds.

In New York, some lawmakers and treatment advocates say the governor’s proposed budget substitutes millions of opioid settlement dollars for a portion of the state addiction agency’s normal funding.

Given the complexities of state and local budgets, it’s often difficult to spot supplantation. But one place to start is identifying how much opioid settlement money your community has received so far. Use our searchable database to find out. Then ask elected officials how they’re spending those dollars. In many places, dedicated citizens are the only watchdogs for this money.

If you discover anything interesting, shoot me a note.

This article is not available for syndication due to republishing restrictions. If you have questions about the availability of this or other content for republication, please contact NewsWeb@kff.org.

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MODESTO, Calif. — When American Advanced Management made a bid for the bankrupt Madera Community Hospital last year, many local officials and others involved in trying to reopen the facility didn’t take the company seriously.

The 11-year-old firm, based in Modesto, was already running a handful of small, rural hospitals, but Madera had far larger and more prestigious suitors, including Trinity Health and then Adventist Health.

After those two entities had backed out, the bankruptcy judge tentatively greenlighted the AAM proposal. But a nonprofit community group later objected in a court filing, citing concerns about AAM’s commitment to fully reopen the hospital and airing allegations of “dishonesty, fraud, perjury, and maladministration.”

The Madera Coalition for Community Justice and other critics of the AAM deal hoped that Adventist and the University of California-San Francisco, which made a last-minute joint proposal in February to take over the hospital, might get another look.

But Gov. Gavin Newsom all but ended the drama on April 8 by announcing the state had approved the AAM plan and would provide a $57 million loan from a fund for distressed hospitals to help reopen and operate the Madera facility.

The same day, AAM, along with the Madera hospital and its creditors, asked the court to strike MCCJ’s objection from the record and requested an April 11 hearing for the judge to consider the motion. MCCJ pushed back with its own filing objecting to the request.

The closure of the hospital in January 2023 left Madera County, home to 160,000 people, largely Hispanic agricultural workers, without a general acute care facility. Like many rural hospitals in California and around the country, the Madera hospital had suffered financial and demographic challenges, including a large proportion of patients on low-paying government insurance programs, low patient volumes, and difficulty attracting talent, in addition to pandemic-related pressures.

AAM has committed to pay up to $30 million to creditors and reopen the hospital as soon as late summer. The company has a portfolio of nine hospitals, many of them in underserved regions of California.

“American Advanced Management has a proven track record of reopening closed hospitals in California and saving others from the brink of closure,” said Matthew Beehler, the company’s chief strategy officer.

It remains uncertain whether AAM can make the Madera hospital financially viable. Reopening alone will cost millions, and many of the same constraints that led to the bankruptcy remain. In its final two years of operations, the Madera hospital lost $14 million.

Beehler said AAM would aim for “operational efficiency” through centralized administration and “elevate the quality of care” to attract more patients. “These strategic investments and improvements are designed to stabilize the hospital’s financial footing and ensure its sustainability in the long term,” he said.

According to a recent study by the Pittsburgh-based Center for Healthcare Quality and Payment Reform, 30% of California’s 56 rural hospitals and the same percentage of rural hospitals nationwide are at risk of closing.

“The economics of small hospitals is such that it is unlikely they are going to be highly profitable,” said Harold Miller, the center’s CEO.

The group objecting to AAM, along with many members of the community, are particularly worried that the company won’t reopen the Madera hospital’s labor and delivery department, where over 700 babies were born in 2022.

Labor and delivery at many rural hospitals are among the first services new owners cut because they tend to lose money, said Ge Bai, professor of health policy and management at Johns Hopkins University’s Bloomberg School of Public Health.

Beehler said a reopened Madera would provide “many of the ancillary services” related to pregnancy and that AAM would “regularly evaluate” whether it makes financial and clinical sense to have a labor and delivery unit at the hospital.

‘Someone Has to Take a Stand’

AAM is the brainchild of Gurpreet Singh Randhawa, who says he is its sole owner.

Singh, a gastroenterologist-turned-entrepreneur, has amassed hospitals and other health care-related companies, as well as numerous real estate holdings. Public records show dozens of businesses that are or have been associated with Singh.

After graduating from medical school in India in 2000, Singh completed further training in New York and New Jersey before moving to California in 2008. In an interview, Singh said he was inspired to open his first hospital after seeing a friend drive three hours round trip to the Sacramento area every day to visit his father in a long-term acute care hospital because Modesto didn’t have one of its own.

Singh said he thought “‘someone has to take a stand,’ so I took that stand.” He said he spent $36 million to open Central Valley Specialty Hospital at the site of a shuttered facility in Modesto. It opened in mid-2013, marking the beginning of AAM.

Since then, AAM has acquired numerous hospitals and clinics in Northern California and the Central Valley, including Colusa Medical Center and Glenn Medical Center in 2017, Sonoma Specialty Hospital in 2019, and Coalinga Regional Medical Center in 2020.

In 2023, the firm took over management of the troubled Orchard Hospital in Gridley, California. Last September, AAM announced it had taken over operations of Kentfield Specialty Hospital, with locations in San Francisco and Marin County. It also owns a rehabilitation hospital in Amarillo, Texas.

AAM lost a combined $22.3 million in 2021 and 2022, state data shows. But Beehler said the company returned to profitability in 2023 and expects profit margins in the high single digits this year. He estimated that AAM’s total operating revenue will jump to approximately $400 million in 2024 from $290 million in 2023, mainly due to the addition of three hospitals.

The source of the funds to finance the company’s growth is not entirely clear. Singh cited family wealth and real estate, but he declined to discuss his family’s money. The firm’s agreement with the Madera hospital says AAM will have “immediately available funds in cash” to meet its obligations. The $57 million approved by the state this week will be a key source of funding.

Beehler said another source of cash to finance growth is AAM’s earnings on longer-term care. Central Valley Specialty Hospital has been profitable since its first full year of operations in 2014, posting cumulative earnings of over $66 million through 2022, according to data from the state’s Department of Health Care Access and Information. Coalinga Regional Medical Center has a 99-bed skilled nursing facility in addition to its acute care beds, and Sonoma Specialty Hospital recently added 21 beds, according to Beehler.

Acute vs. Long-Term Care

Critics fear AAM might take the Madera hospital in the direction of long-term care, depriving the community of a viable acute care facility. Cece Gallegos, who recently lost her bid for a seat on the Madera County Board of Supervisors, said in a campaign mailer that the firm would turn Madera into “a glorified nursing home.”

Beehler rebuffed that notion, saying the company couldn’t do that even if it wanted to. He said the conditions imposed by the state attorney general “require an acute care hospital with fully functional ER and ancillary services.” The attorney general’s conditions, however, require AAM only to make “commercially reasonable efforts” to provide those services.

Singh and his health care businesses have hit plenty of bumps as they’ve grown.

In 2018, AAM took over management of Sonoma West Medical Center, a publicly owned hospital in the city of Sebastopol that had declared bankruptcy. In 2019, AAM acquired it outright and changed its name to Sonoma Specialty Hospital. Later that year, a bankruptcy trustee sued Singh, AAM, and the hospital for allegedly taking money that belonged to its predecessor, and the parties settled for $1.15 million. Beehler said AAM did not retain any of the money but used it for hospital operations and became “an unintended victim.” The company chose to settle, he said, “to bring finality to this complex issue.”

In 2021, the state fined AAM’s Pacific Gardens Medical Center $276,000 for four situations that put patients in “immediate jeopardy,” including one in which inadequate training caused an intravenous dose of fentanyl to drip into a patient nearly seven times as rapidly as the doctor had ordered.

AAM had reopened the hospital in January 2021, about three years after buying it out of bankruptcy. Its license was suspended less than five months later, according to the California Department of Public Health. Beehler said the hospital had reopened as a pandemic surge hospital with support, including the provision of nurses and physicians, from the state’s Emergency Medical Services Authority. “By its nature, a surge facility opening is temporary,” he said.

The accelerated timeline for getting it open contributed to the patient-jeopardy situations, he said.

In 2022, the California Department of Health Care Services sued Sonoma Specialty Hospital, Singh, and AAM, accusing them of illegitimately seeking, and accepting, $270,000 from a program that provides federal financing for certain public hospitals.

DHCS said it had told AAM that it wasn’t eligible for the money, because it was now a for-profit facility, but that the company refused to pay it back. In February, a Sonoma County judge sided with DHCS. DHCS spokesperson Leah Myers said in an emailed statement that the state does not typically have to sue to recover money. Beehler said AAM “disputes that there is any liability” and is appealing the decision.

Another Singh venture was Advanced College, a private vocational school for health care professionals with three locations in central and Southern California. After receiving numerous complaints, state regulators ordered the school to cease operations in December 2022, alleging it had falsified records and test results, and “failed to provide documentation of sufficient financial resources.”

Joshua Maruca, the school’s custodian of records, said Advanced College disagreed with the state’s allegations but had already been planning to shut down for other reasons, so it did not contest them.

Bank of the West also sued Singh and several of his businesses for repeated defaults on over $4.7 million in loans, mostly related to the college. The lawsuit was settled, but one of the bank’s lawyers, Wayne Terry, said he could not discuss the settlement. Beehler said the loans were not part of AAM’s financials. The bank was “paid fully,” he said.

The company’s critics say the state didn’t sufficiently scrutinize AAM before approving the loan and the operating plan this week.

“The state agencies and the Attorney General, all tasked here with protecting the public interest, have utterly failed to do the basic due diligence that would ensure Madera Community Hospital is resurrected as a viable going concern, under the stewardship of a reliable, trustworthy, and capable operator,” the MCCJ said in the court filing opposing the challenge to its objection.

AAM said in a statement that it was “grateful” to Newsom and the state for approving the deal, and “honored to serve the Madera community.” The bankruptcy court is likely to give its final blessing next week.

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

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Until last week, the system that is used to enroll people in federal Affordable Care Act insurance plans inadvertently allowed access by insurance brokers to consumers’ full Social Security numbers, information brokers don’t need.

That raised concerns about the potential for misuse.

The access to policyholders’ personal information was one of the problems cited in a KFF Health News article describing growing complaints about rogue agents enrolling people in ACA coverage, also known as Obamacare, or switching consumers’ plans without their permission in order to garner the commissions. The consumers are often unaware of the changes until they go to use their plan and find their doctors are not in the new plan’s network or their drugs are not covered.

Agent Joshua Brooker told KFF Health News it was relatively easy for agents to access full Social Security numbers through the federal insurance marketplace’s enrollment platforms, warning that “bad eggs now have access to all this private information about an individual.”

On April 1, the morning the article was posted on NPR’s website, Brooker said, he got a call from the Centers for Medicare & Medicaid Services questioning the accuracy of his comments.

A CMS representative told him he was wrong and that the numbers were hidden, Brooker said April 7. “I illustrated that they were not,” he said.

After he showed how the information could be accessed, “the immediate response was a scramble to patch what was acknowledged as ‘problematic,’” Brooker posted to social media late last week.

Brooker has followed the issue closely as chair of a marketplace committee for the National Association of Benefits and Insurance Professionals, a trade group.

After some phone calls with CMS and other technical experts, Brooker said, the federal site and direct enrollment partner platforms now mask the first six digits of the SSNs.

“It was fixed Wednesday evening,” Brooker told KFF Health News. “This is great news for consumers.”

An April 8 written statement from CMS said the agency places the highest priority on protecting consumer privacy.

“Upon learning of this system vulnerability, CMS took immediate action to reach out to the direct enrollment platform where vulnerability was identified to make sure it was addressed,” wrote Jeff Wu, acting director of the Center for Consumer Information & Insurance Oversight at CMS.

He added that the Social Security numbers were not accessible through routine use of the platform but were in a portion of the site called developer tools. “This issue does not impact healthcare.gov,” Wu wrote.

Brooker’s concern about Social Security numbers centered on access by licensed agents to existing policyholder information though the federal marketplace, not including the parts of healthcare.gov used by consumers, who cannot access anything but their own accounts.

While consumers can enroll on their own, many turn to agents for assistance. There are about 70,000 licensed agents nationwide certified to use the healthcare.gov site or its partner enrollment platforms. They must meet certain training and licensing requirements to do so. Brooker has been quick to say it is a minority of agents who are causing the problem.

But agents increasingly are frustrated by what they describe as a sharp increase during the second half of 2023 and into 2024 of unscrupulous rivals switching people from one plan to another, or at least switching the “agent of record” on the accounts, which directs the commission to the new agent. Wu’s statements have so far not included requested information on the number of complaints about unauthorized switching, or the number of agents who have been sanctioned as a result.

The changes shielding the Social Security numbers are helpful, Brooker said, but won’t necessarily slow unauthorized switching of plans. Rogue agents can still switch an enrollee’s plan with simply their name, date of birth, and state of residence, despite rules that require agents to collect written or recorded consent from consumers before making any changes.

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When the FDA recently convened a committee of advisers to assess a cardiac device made by Abbott, the agency didn’t disclose that most of them had received payments from the company or conducted research it had funded — information readily available in a federal database.

One member of the FDA advisory committee was linked to hundreds of payments from Abbott totaling almost $200,000, according to a database maintained by the Department of Health and Human Services. Another was connected to 100 payments totaling about $100,000 and conducted research supported by about $50,000 from Abbott. A third member of the committee worked on research supported by more than $180,000 from the company.

The government database, called “Open Payments,” records financial relationships between doctors and certain other health care providers and the makers of drugs and medical devices. KFF Health News found records of Abbott payments associated with 10 of the 14 voting members of the FDA advisory panel, which was weighing clinical evidence for a heart device called TriClip G4 System. The money, paid from 2016 through 2022 — the most recent year for which the database shows payments — adds up to about $650,000.

The panel voted almost unanimously that the benefits of the device outweigh its risks. Abbott announced on April 2 that the FDA had approved TriClip, which is designed to treat leakage from the heart’s tricuspid valve.

The Abbott payments illustrate the reach of medical industry money and the limits of transparency at the FDA. They also shed light on how the agency weighs relationships between people who serve on its advisory panels and the makers of drugs and medical devices that those committees review as part of the regulatory approval process.

The payments do not reflect wrongdoing on the part of the agency, its outside experts, or the device manufacturer. The database does not show that any of the payments were related directly to the TriClip device.

But some familiar with the process, including people who have served on FDA advisory committees, said the payments should have been disclosed at the Feb. 13 meeting — if not as a regulatory requirement, then in the interest of transparency, because the money might call into question committee members’ objectivity.

“This is a problem,” Joel Perlmutter, a former FDA advisory committee member and a professor of neurology at Washington University School of Medicine in St. Louis, said by email. “They should or must disclose this due to bias.”

The Open Payments database records several kinds of payments from drug and device makers. One category, called “associated research funding,” supports research in which a physician is named a principal investigator in the database. Another category, called “general payments,” includes consulting fees, travel expenses and meals connected to physicians in the database. The money can flow from manufacturers to third parties, such as hospitals, universities, or other corporate entities, but the database explicitly connects doctors by name to the payments.

At the public meeting to consider the TriClip device, an FDA official announced that committee members had been screened for potential financial conflicts of interest and found in compliance with government requirements.

FDA spokesperson Audra Harrison said by email that the agency doesn’t comment on matters related to individual advisory committee members.

“The FDA followed all appropriate procedures and regulations in vetting these panel members and stands firmly by the integrity of the disclosure and vetting processes in place,” she said. “This includes ensuring advisory committee members do not have, or have the appearance of, a conflict of interest.”

Abbott “has no influence over who is selected to participate in FDA advisory committees,” a spokesperson for the company, Brent Tippen, said in a statement.

Diana Zuckerman, president of the National Center for Health Research, a think tank, said the FDA shouldn’t have allowed recipients of funding from Abbott in recent years to sit in judgment of the Abbott product. The agency takes too narrow a view of what should be disqualifying, she said.

One committee member was Craig Selzman, chief of the Division of Cardiothoracic Surgery at the University of Utah. The Open Payments database connects to Selzman about $181,000 in associated research funding from Abbott to the University of Utah Hospitals & Clinics.

Asked in an interview if a reasonable person could question the impartiality of committee members based on the Abbott payments, Selzman said: “People from the outside looking in would probably say yes.”

He noted that Abbott’s money went to the university, not to him personally. Participating in industry-funded clinical trials benefits doctors professionally, he said. He added: “There’s probably a better way to provide transparency.”

The FDA has a history of appointing people to advisory committees who had relationships with manufacturers of the products under review. For example, in 2020, the doctor who chaired an FDA advisory committee reviewing Pfizer’s covid-19 vaccine had been a Pfizer consultant.

Appearance Issues

FDA advisory committee candidates, selected to provide expert advice on often complicated drug and device applications, must complete a confidential disclosure report that asks about current and past financial interests as well as “anything that would give an ‘appearance’ of a conflict.”

The FDA has discretion to decide whether someone with an “appearance issue” can serve on a panel, according to a guidance document posted on the agency’s website. Relationships more than a year in the past generally don’t give rise to appearance problems, according to the document, unless they suggest close ties to a company or involvement with the product under review. The main question is whether financial interests would cause a reasonable person to question the member’s impartiality, the document says.

The FDA draws a distinction between appearance issues and financial conflicts of interest. Conflicts of interest occur when someone chosen to serve on an advisory committee has financial interests that “may be impacted” by their work on the committee, an FDA explainer says.

If the FDA finds a conflict of interest but still wants the applicant on a panel, it can issue a public waiver. None of the panelists voting on TriClip received a waiver.

The FDA’s approach to disclosure contrasts with rules for conferences at which doctors earn credit for continuing medical education. For example, for a recent conference in Boston on technology for treatment of heart failure, including TriClip, the group holding the meeting directed speakers to include in their slide presentations disclosures going back 24 months.

Those disclosures — naming companies from which speakers had received consulting fees, grant support, travel expenses, and the like — also appeared on the conference website.

‘Unbridled Enthusiasm’

The FDA has designated TriClip a “breakthrough” device with “the potential to provide more effective treatment or diagnosis of a life-threatening or irreversibly debilitating disease” compared with current treatments, an agency official, Megan Naber, told the advisory committee.

Naber said that for breakthrough devices, the “totality of data must still provide a reasonable assurance of safety and effectiveness” but the FDA “may be willing to accept greater uncertainty” about the balance of risks and benefits.

In a briefing paper for the advisory committee, FDA staff pointed out findings from a clinical trial that didn’t reflect well on TriClip. For example, patients treated with TriClip had “numerically higher” mortality and heart failure hospitalization rates during the 12 months after the procedure compared with a control group, according to the report. Tippen, the Abbott spokesperson, didn’t respond to a request for comment on those findings.

The committee voted 14-0 that TriClip was safe for its intended use. The panel voted 12-2 that the device was effective, and it voted 13-1 that the benefits of TriClip outweighed the risks.

The committee member to whom the database attributes the most money from Abbott, Paul Hauptman, cast one of the votes against the device on effectiveness and the sole vote against the device on the bottom-line question of its risks versus benefits.

Hauptman said during the meeting that the question of safety was “very, very clear” but added: “I just felt the need to pull back a little bit on unbridled enthusiasm.” Who will benefit from the device, he said, “needs better definition.”

Hauptman, dean of the University of Nevada-Reno School of Medicine, is connected to 268 general payments from Abbott totaling about $197,000 in the Open Payments database. Some payments are listed as going to an entity called Keswick Cardiovascular.

Hauptman said in an email that he followed FDA guidance and added, “My impartiality speaks for itself based on my vote and critical comments.”

Some committee members voted in favor of the device despite concerns.

Marc Katz, chief of the Division of Cardiothoracic Surgery at the Medical University of South Carolina, is linked to 77 general payments totaling about $53,000 from Abbott and worked on research supported by about $10,000 from the company, according to Open Payments.

“I voted yes for safety, no for effectiveness, but then caved and voted yes for the benefits outweighing the risks,” he said in the meeting.

In an email, he said of his Abbott payments: “All was disclosed and reviewed by the FDA.” He said that he “can be impartial” and that he “openly expressed … concerns about the treatment.”

Mitchell Krucoff, a professor at Duke University School of Medicine, is connected to 100 general payments totaling about $105,000. Some went to a third party, HPIC Consulting. He also worked on research supported by about $51,000 from Abbott, according to Open Payments.

He said during the meeting that he voted in favor of the device on all three questions and added that doctors have “a lot to learn” once it’s on the market. For instance: By using the device to treat patients now, “do we set people up for catastrophes later?”

In an email, Krucoff said he completed a “very thorough conflict of interest screening by FDA for this panel,” which focused not only on Abbott but also on “any work done/payments received from any other manufacturer with devices in this space.”

John Hirshfeld Jr., an emeritus professor of medicine at the University of Pennsylvania, is linked by the database to six general payments from Abbott totaling $6,000. Two of the payments linked to him went to a nonprofit, the Cardiovascular Research Foundation, according to the database. He voted yes on all three questions about TriClip but said at the meeting that he “would have liked to have seen more rigorous data to support efficacy.”

In an email, Hirshfeld said he disclosed the payments to the FDA. The agency did not deem him to have a conflict because he had no stake in Abbott’s success and his involvement with the company had ended, he said. Through the conflict-of-interest screening process, he said, he had been excluded from prior advisory panels.

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A TMJ patient in Maine had six surgeries to replace part or all of the joints of her jaw.

Another woman in California, desperate for relief, used a screwdriver to lengthen her jawbone daily, turning screws that protruded from her neck.

A third in New York had bone from her rib and fat from her belly grafted into her jaw joint, and twice a prosthetic eyeball was surgically inserted into the joint as a placeholder in the months it took to make metal hinges to implant into her jaw.

“I feel like Mr. Potato Head,” said Jenny Feldman, 50, of New York City, whose medical records show she’s had at least 24 TMJ-related surgeries since she was a teenager. “They’re moving ribs into my face, and eyeballs, and I feel like a toy … put together [by] somebody just tinkering around.”

These are some of the horrors of temporomandibular joint disorders, known as TMJ or TMD, which afflict up to 33 million Americans, according to the National Institutes of Health. Dentists have attempted to heal TMJ patients for close to a century, and yet the disorders remain misunderstood, under-researched, and ineffectively treated, according to an investigation by KFF Health News and CBS News.

Dental care for TMJ can do patients more harm than good, and a few fall into a spiral of futile surgeries that may culminate in their jaw joints being replaced with metal hinges, according to medical and dental experts, patients, and their advocates speaking in interviews and video testimony submitted to the FDA.

TMJ disorders cause pain and stiffness in the jaw and face that can range from discomfort to disabling, with severe symptoms far more common in women. Dentists have commonly treated the disorder with splints and orthodontics. And yet these treatments are based on “strongly held beliefs” and “inadequate research” — not compelling scientific evidence nor consistent results — according to the National Academies of Sciences, Engineering and Medicine, which reviewed decades of research on the topic. The NIH echoes this message, warning that there is “not a lot of evidence” that splints reduce pain and recommends “staying away” from any treatment that permanently changes the teeth, bite, or jaw.

“I would say that the treatments overall have not been effective, and I can understand why,” said Rena D’Souza, director of the NIH’s National Institute of Dental and Craniofacial Research. “We don’t understand the disease.”

For this investigation, journalists with KFF Health News and CBS News interviewed 10 TMJ patients with severe symptoms who said they felt trapped by an escalating series of treatments that began with splints or dental work and grew into multiple surgeries with diminishing returns and dwindling hope.

In every interview, the patients said the TMJ pain worsened throughout their treatment and they regretted some, if not all, of the care they received.

“The grand irony to me is that I went to the doctor for headaches and neck pain, and I’ve had 13 surgeries on my face and jaw, and I still have even worse neck pain,” said Tricia Kalinowski, 63, of Old Orchard Beach, Maine. “And I live with headaches and jaw pain every day.”

TMJ has become an umbrella term for about 30 disorders that afflict roughly 5% to 10% of Americans. Minor symptoms may not require treatment at all, and many cases resolve by themselves over time. Severe symptoms include chronic pain and may limit the ability to eat, sleep, or talk.

In a comprehensive study of TMJ disorders by the national academies, including input from more than 110 patients, experts found that most health care professionals, including dentists, have received “minimal or no training” on TMJ disorders and patients are “often harmed” by “overly aggressive” care and the lack of proven treatments.

Almost 100 years this has been in dentistry, and look at what we have… A whole ton of people pretending they know everything, and we don’t know anything.

Terrie Cowley, TMJ patient

The American Dental Association, which represents about 160,000 dentists nationwide and establishes guidelines for the profession, declined an interview request. In a written statement, ADA President Linda Edgar said that TMJ disorders are “often managed rather than cured” and that it sees “great potential” in new efforts to research more treatment options.

Terrie Cowley, a longtime TMJ patient who leads the TMJ Association, an advocacy group that has spoken with tens of thousands of patients, said she was so disillusioned with dental care for TMJ that she advises many patients to avoid treatment entirely, potentially for years.

“Almost 100 years this has been in dentistry, and look at what we have,” Cowley said. “A whole ton of people pretending they know everything, and we don’t know anything.”

‘Not Taken Seriously’

Scientific studies have found that TMJ disorders arise up to nine times as often in women, particularly those in their 20s and 30s, leading to theories that the cause may be linked to reproductive hormones. But a true understanding of TMJ disorders remains elusive.

Kyriacos Athanasiou, a biomedical engineering professor at the University of California-Irvine, said it was because TMJ disorders are more prevalent among women that they were historically dismissed as neither serious nor complex, slowing research into the cause and treatment.

The resulting dearth of knowledge, which is glaring when compared with other joints, has been “a huge disservice” to patients, Athanasiou said. In a 2021 study he co-authored, researchers found that the knee, despite being a much simpler joint, was the subject of about six times as many research papers and grants in a single year than the jaw joint.

D’Souza agreed that TMJ disorders were “not taken seriously” for decades, along with other conditions that predominantly affect women.

“That has been a bias that is really long-standing,” she said. “And it’s certainly affected the progress of research.”

Patients have felt the effect too. In interviews, female patients said they felt patronized or trivialized by male health care providers at some point in their TMJ treatment, if not throughout. Some said they felt blamed for their own pain because they were viewed as too stressed and clenching their jaw too much.

“We desperately need research to find the reasons why more women get TMJ disease,” wrote Lisa Schmidt, a TMJ Association board member, in a 2021 newsletter from the organization. “And surgeons need to stop blaming this condition on women.”

Every time you have a surgery, your pain gets worse… If I could go back in time and go talk to younger Lisa, I would say ‘Run!’

Lisa Schmidt, TMJ patient

Schmidt, 52, of Poway, California, said she was diagnosed with TMJ disorder in 2000 due to headaches, and an orthodontist immediately recommended her for a splint, braces, and surgery.

After wearing the splint for only three days, Schmidt said, she was in “excruciating pain” and could no longer open her mouth far enough to eat solid food. Schmidt said she spent the next 17 years stuck on a “surgery carousel” with no escape, and eventually was in so much pain she abandoned her career as an aerospace scientist who worked alongside NASA astronauts.

Schmidt said her low point came in 2016. In an attempt to restore bone that had been cut away in prior surgeries, a surgeon implanted long screws into Schmidt’s jaw that protruded downward out of her neck. Schmidt said she was instructed to tighten those screws with a screwdriver daily for about 20 days, lengthening the corners of her jaw to restore the bone that had been lost. It didn’t work, Schmidt said, and she was left in more pain than ever.

“Every time you have a surgery, your pain gets worse,” Schmidt said. “If I could go back in time and go talk to younger Lisa, I would say ‘Run!’”

Lack of Sufficient Evidence

Many of the shortcomings of TMJ care were laid bare in the 426-page report published by the national academies in March 2020 that received limited public attention amid the coronavirus pandemic. The report’s 18 authors include medical and dental experts from Harvard, Duke, Clemson, Michigan State, and Johns Hopkins universities.

Sean Mackey, a Stanford professor who co-led the team, said it found that patients were often steered toward costly treatments and “pathways of futility” instead of being taught to manage their pain through strategies and therapies with “good evidence.”

“We learned it’s a quagmire,” Mackey said. “There is a perverse incentive in our society that pays more for things we do to people than [for] talking and listening to people. … Some of those procedures, some of those surgeries, clearly are not helping people.”

Among its many findings, the national academies said it has been widely assumed in the field of dentistry that TMJ disorders are caused by a misaligned bite, so treatments have focused on patients’ teeth and bite for more than 50 years. But there is a “notable absence of sufficient evidence” that a misaligned bite is a cause of TMJ disorders, and the belief traces back to “inadequate research” in the 1960s that has been repeated in “poorly-designed studies” ever since, the report states.

Therefore, TMJ treatment that makes permanent changes to the bite — like installing braces or crowns or grinding teeth down — has “no supporting evidence,” according to the national academies report. The NIH warns that these TMJ treatments “don’t work and may make the problem worse.”

Dental splints, the most common TMJ treatment, also known as night guards or mouth guards, are removable dental appliances that are molded to fit over the teeth and can cost hundreds or even thousands of dollars out-of-pocket, according to the TMJ Association. Like most medical devices, splints generally go through the FDA’s 510(k) clearance process, which does not require each splint to be proven effective before it can be sold, according to the agency.

The national academies’ report states that splints produce “mixed results” for TMJ patients, and even when splints succeed at reducing jaw pain it is not understood why they work. Hundreds of splint designs exist, the report states, and some dentists reject research that challenges the use of splints unless it focuses on the specific design they prefer.

“Because of the hundreds of variations in [splint] design, it is unlikely that any study could ever be conducted that will be considered sufficient to a particular dentist with a pre-existing belief about the effectiveness of one appliance,” the report states.

Other treatments fare no better. The FDA has not labeled any drugs specifically for TMJ disorders, and pain medicines can be too weak or addictive to be a long-term solution, according to the TMJ Association. Botox injections may ease pain but have raised concerns about bone loss during animal testing. The NIH warns that minor surgeries that flush the jaw with liquid bring only temporary pain relief and that more complex surgeries should be reserved for severe cases because they have yet to be proved safe or effective in the long term.

To improve care, the national academies called for better education about TMJ disorders across medicine and dentistry and more research funding from the NIH, which has a “ripple effect” on research and training across the nation.

Since the 2020 report, the NIH has launched a TMJ research collaborative and increased annual research funding from about $15 million to about $34 million, D’Souza said. TMJ care was added to the standards that dental schools must teach to be accredited in 2022. The national academies launched an ongoing forum on TMJ disorders last year.

But TMJ funding still pales in comparison to other ailments. The NIH spends billions each year to research deadly diseases, like cancer and heart disease, that also afflict large numbers of Americans. It spends millions more on research of non-life-threatening conditions like arthritis, back pain, eczema, and headaches.

Mackey noted that much of the NIH’s spending is allocated by Congress.

“If Congress comes in and says, ‘We want to devote X amount of money to [TMJ],’ all of the sudden you will see an increase in money,” Mackey said. “So that’s my message to people out there: Raise your voices. Write your legislator.”

Total Jaw Replacements

Plagued by TMJ symptoms, and after failed treatments, some patients turn to a last resort: replacing their jaw joint with synthetic implants. Surgeons might replace the cartilage disk at the core of the joint or use “total joint replacement surgery” to fasten a metal hinge to the bones of the skull.

But the implants have a harrowing history: Several disk implants were recalled or discontinued in the ’90s due to dangerous failures. The FDA now classifies TMJ implants among its most closely monitored medical devices because the products on the market today can cause “adverse health consequences” if the devices fail, according to the agency’s website.

Two companies, Zimmer Biomet and Stryker, make the only total jaw replacement implants currently sold in the U.S.

Zimmer Biomet, which has made its implant for more than two decades, described it in email statements as “a safe and efficacious solution” for patients who need their jaw joint replaced, either due to TMJ disorders, failed surgeries, injuries, or other ailments. An FDA-mandated study completed in 2017 found about 14% of patients who get the Zimmer Biomet implant require additional surgery or removal within 10 years, said agency spokesperson Carly Pflaum.

Stryker, which in 2021 bought a company that made a total jaw replacement implant and now makes the implant itself, declined to comment. Although the NIH has advised TMJ patients to avoid surgery since at least 2022, Stryker launched a “patient-facing website” for the implant last year and is recruiting surgeons to be added to a “surgeon locator” feature on the site, according to posts on Facebook and LinkedIn.

A study of the Stryker implant’s success rate was mandated by the FDA and completed in 2020, but the agency has yet to make the results public.

D’Souza, the NIH official, said that based on her professional experience, she estimates that most total jaw replacement surgeries are ultimately ineffective.

“The success rate is low,” D’Souza said. “It is not very encouraging.”

Multiple patients provided KFF Health News and CBS News with medical records showing their total jaw replacement implants had to be removed due to malfunction, infection, or previously unknown metal allergies. Several patients said that since their implants were removed months or years ago, they have lived with no hinge in their jaw at all.

Kalinowski, the TMJ patient in Maine, has had portions of her jaw joint replaced six times, including receiving four implants. Her medical records show that the cartilage disk on her right side was replaced in 1986 with an implant that was later recalled and again in 1987 with another that was later discontinued. Her left and right disks were replaced in 1992 with a muscle flap and rib graft, respectively, and her entire right joint was replaced with yet another implant that was later discontinued in 1998. Both joints were replaced again in 2015, her records show.

Since then, Kalinowski said, her artificial jaw has functioned properly, although she remains in pain and cannot move her jaw from side to side. Her mouth hangs open when her face is at rest, and she drinks protein shakes for lunch because it’s easier than struggling with solid food.

But the “worst part,” Kalinowski said, is that her surgeries caused nerve damage on her lower face, and so she has not felt her husband’s kisses since the ’90s.

“If there was one moment in my life I could take back and do over again, it would be that first surgery. Because it set me on a trajectory,” Kalinowski said. “And it never goes away.”

CBS News producer Nicole Keller contributed to this article.

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Companies have increasingly offered generous fertility benefits to attract and keep top-notch workers. Now, the federal government is getting in on the act. Starting this year, federal employees can choose plans that cover several fertility services, including up to $25,000 annually for in vitro fertilization procedures and up to three artificial insemination cycles each year.

With about 2.1 million civilian employees, the federal government is the nation’s largest employer. Now, just as businesses of every stripe prioritize fertility benefits, in vitro fertilization — a procedure in use for more than 40 years — has become a tricky topic for some anti-abortion Republican members of Congress and even presidential candidates.

It was inevitable that disagreements over IVF among abortion opponents would eventually break into the open, said Mary Ziegler, a legal historian and expert on reproductive health.

“The anti-abortion movement from the 1960s onward has been a fetal personhood movement,” said Ziegler, a law professor at the University of California-Davis. Since the U.S. Supreme Court’s Dobbs decision eliminated the constitutional right to abortion, anti-abortion groups and the Republican Party are grappling with what “fetal personhood” means and how that fits into their position on IVF and other technologies that help people have babies.

The Alabama Supreme Court set the stage for the recent brouhaha with a ruling last month that frozen embryos created through IVF are children under state law. A pair of Democratic senators advanced legislation that would override state laws by establishing a statutory right to access IVF and other such technologies. The bill was blocked on the Senate floor by a Republican opponent.

These events highlight the tough spot in which Republicans find themselves. Many support IVF, and they are keenly aware that it’s extremely popular: 86% of adults in a recent CBS News-YouGov poll said IVF should be legal. The outcry over the Alabama ruling and Republicans’ inability to coalesce around a federal response, however, has exposed fault lines in the party.

Some anti-abortion groups have strenuously objected to measures like that Senate bill, arguing that lawmakers must balance IVF with the responsibility to respect life.

Republicans “are trying to finesse it, which is very hard,” Ziegler said.

About 10% of women and men face fertility problems, according to the National Institute of Child Health and Human Development. IVF, a process in which an egg is fertilized in a laboratory and later implanted in the uterus, is among the most expensive fertility treatments, costing about $20,000 for one round. Even with insurance coverage, the procedure is pricey, but for some people it’s the only way to conceive.

In recent years, the number of companies offering fertility benefits to employees has grown steadily. In the early 2000s, fewer than a quarter of employers with at least 500 workers covered IVF, according to benefits consultant Mercer’s annual employer survey. In 2023, that figure had roughly doubled, to 45%. Employers typically cap IVF benefits. In 2023, employers had a median lifetime maximum benefit of $20,000 for IVF, according to the Mercer survey.

The federal government’s IVF benefit — paying up to $25,000 a year — is more generous than that of a typical employer. Coverage is available through the popular Blue Cross and Blue Shield Federal Employee Program’s standard option. Altogether, two dozen 2024 health plans for federal workers offer enhanced IVF coverage, with varying benefits and cost sharing, according to the federal Office of Personnel Management, which manages the federal health plans.

“OPM’s mission is to attract and retain the workforce of the future,” said Viet Tran, OPM’s press secretary, in written answers to questions. He noted that surveys have found that federal health benefits have influenced employees’ decisions to stay with the federal government.

Starting this year, plans offered to federal employees are required to offer fertility benefits, according to OPM.

But it’s unclear how the emerging political debate surrounding IVF and other reproductive health issues could affect national benefit and coverage trends.

Last month, after the Alabama Supreme Court ruled that frozen embryos left over following IVF procedures are considered children under state law, the state legislature quickly passed and Republican Gov. Kay Ivey signed a bill that grants immunity to patients and providers who participate in IVF services. During the ensuing dust-up, a coalition of more than a dozen anti-abortion groups signed a letter drawing a clear line in the sand. “Both science and logic have made it clear that embryos must be accorded the same human rights” as other human beings, it read. The Alabama law didn’t address the underlying issue of the “personhood” of the embryos, leaving open the door for further litigation and potential restrictions on IVF in Alabama and other states, some legal analysts say.

More than a third of states have laws on the books that classify fetuses as people at some stage of pregnancy, according to an analysis by Politico.

It’s unclear whether the turmoil surrounding the Alabama case will have long-term repercussions for employee benefits there or in other states.

“If this were something that were to happen in multiple states, employers would have to figure out how to navigate around that,” said Jim Winkler, chief strategy officer of the Business Group on Health, a nonprofit that represents the interests of large employers. At this point, employers will want to keep a watchful eye on the issue but probably not plan any changes, Winkler said.

A Mercer blog post advised businesses with Alabama employees to review health plan policies related to medical travel and leave benefits. Further, “employers should monitor other states that broadly define fetal personhood and restrict reproductive healthcare,” the blog post advised.

The situation is reminiscent of what happened with abortion coverage following the Supreme Court’s Dobbs decision in 2022. As states imposed restrictions on access to abortions, many companies began providing travel expenses for their workers to seek them.

But what happened with abortion may not be a good predictor of what will happen with IVF, said Dorianne Mason, director of health equity at the National Women’s Law Center.

Following the Alabama judge’s ruling, “the legislature in Alabama moved so quickly to respond to the outcry,” Mason said. “When we look at the legislative response to IVF, it’s moving in a markedly different direction on access to care” than has occurred with other types of reproductive care.

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DENVER, Colorado. — En febrero, la hija adolescente de Norma Brambila le escribió una carta que ahora lleva en su cartera. Es un dibujo de una rosa y una nota alentadora que anima a su mamá a “seguir luchando” contra su enfermedad, y que le recuerda que algún día se reunirá con su familia en el cielo.

Brambila, una organizadora comunitaria que emigró de México hace un cuarto de siglo, solo tenía sinusitis, pero sus hijos nunca la habían visto tan enferma. “Estuve en cama durante cuatro días”, dijo.

Sin seguro de salud, Brambila había estado evitando buscar atención médica, esperando que el ajo y la canela surtieran efecto. Pero cuando sintió que ya no podía respirar, fue a la sala de emergencias. La factura de $365 —suficiente para cubrir una semana de alimentos para su familia— era más de lo que podía pagar, y terminó endeudada.

La deuda también afectó otra decisión que había estado considerando: si ir a México para tener una cirugía para que le extrajeran un crecimiento en su abdomen que, dijo, es tan grande como una papaya.

Brambila vive en un vecindario del suroeste de Denver llamado Westwood, una comunidad mayoritariamente hispana y de bajos ingresos donde muchos residentes son inmigrantes. Westwood también está en un código postal, 80219, con algunos de los niveles más altos de deuda médica en Colorado.

Allí, más de uno de cada 5 adultos han tenido históricamente facturas médicas impagas en sus informes de crédito, una tasa más parecida a la de West Virginia que a la del resto de Colorado, según datos de crédito de 2022 analizados por el Urban Institute, una organización sin fines de lucro.

Las luchas del área reflejan una paradoja sobre Colorado. En general, la carga de deuda médica del estado es más baja que la de la mayoría. Pero las disparidades raciales y étnicas son más amplias.

La brecha entre la carga de deuda en los códigos postales donde los residentes son principalmente hispanos y/o no blancos y los códigos postales que son principalmente blancos no hispanos es el doble de lo que es a nivel nacional. (Los hispanos pueden ser de cualquier raza o combinación de razas).

La deuda médica en Colorado también se concentra en códigos postales con porcentajes relativamente altos de inmigrantes, muchos de ellos de México.

El Urban Institute encontró que el 19% de los adultos en estos lugares tenían deuda médica en sus informes de crédito, en comparación con el 11% en comunidades con menos inmigrantes.

A nivel nacional, aproximadamente 100 millones de personas tienen alguna forma de deuda de atención médica, según una investigación de KFF Health News y NPR. Esto incluye no solo facturas impagas que terminan en agencias de cobros, sino también aquellas que se están pagando a través de planes de pago, tarjetas de crédito u otros tipos de préstamos.

Los datos revelan que las brechas raciales y étnicas en la deuda médica existen casi en todas partes. Pero la división de Colorado —en línea con la de Carolina del Sur, según los datos del Urban Institute— existe aunque el estado tiene algunas de las protecciones más amplias del país contra estas deudas.

Esta brecha amenaza con profundizar desigualdades de larga data, dicen defensores de pacientes y consumidores. Y resalta la necesidad de más acción para abordar la deuda médica.

"Exacerba las brechas raciales de riqueza", dijo Berneta Haynes, abogada principal del National Consumer Law Center, una organización sin fines de lucro que fue co-autora de un informe sobre deuda médica y disparidades raciales.

Haynes dijo que demasiados residentes de Colorado, especialmente residentes de minorías, siguen atrapados en un círculo vicioso en el que evitan la atención médica para evitar las facturas, lo que resulta en más deuda y peor salud.

Brambila dijo que ha visto este ciclo con demasiada frecuencia en Westwood, en su trabajo como organizadora comunitaria. "Realmente me encantaría ayudar a la gente a pagar sus facturas médicas", agregó.

¿Salud o deuda?

Roxana Burciaga, que creció en Westwood y trabaja en Mi Casa Resource Center, en el vecindario, dijo que al menos una vez a la semana escucha preguntas sobre cómo pagar la atención médica.

La deuda médica es un "gran, gran, gran tema en nuestra comunidad", dijo.

La gente no entiende lo que cubre realmente su seguro o no puede conseguir citas para atención preventiva que se ajusten a sus horarios de trabajo, explicó.

Muchos, como Brambila, ignoran la atención preventiva para evitar las facturas y terminan en salas de emergencias.

Los médicos y enfermeras también dicen que observan estas tensiones.

Amber Koch-Laking, médica de familia en el Denver Health’s Westwood Family Health Center, parte del sistema de salud público de la ciudad, dijo que las finanzas a menudo surgen en conversaciones con pacientes. Muchos intentan obtener citas de telesalud para evitar el costo de ir en persona.

Sumándose a la presión están las “desafiliaciones” de Medicaid, el proceso por el cual los estados vuelven a examinar la elegibilidad (proceso que se había suspendido durante la pandemia) para la cobertura de salud para personas de bajos ingresos, dijo Koch-Laking.

"Dicen, 'Oh, estoy perdiendo mi Medicaid en tres semanas, ¿puedes ocuparte de estas siete cosas sin una visita?' o '¿Podemos hacerlo por el portal?, porque no puedo pagar una cita".

Buscando la solución correcta

Colorado ha tomado medidas para proteger a los pacientes de la deuda médica, incluida la expansión de la cobertura de Medicaid a través de la Ley de Cuidado de Salud a Bajo Precio (ACA) promulgada en 2010.

Más recientemente, líderes estatales exigieron a los hospitales ampliar la asistencia financiera para pacientes de bajos ingresos y prohibieron que todo tipo de deudas médicas se reflejaran en los informes de crédito de los consumidores.

Pero las complejidades de muchos programas de asistencia siguen siendo una barrera importante para los inmigrantes y otras personas con conocimiento limitado de inglés, dijo Julissa Soto, consultora de equidad en salud con sede en Denver enfocada en los latinos de Colorado.

Por ejemplo, muchos pacientes no saben que pueden recibir ayuda para sus facturas médicas del estado o de organizaciones comunitarias.

"El sistema de atención médica es un rompecabezas. Mejor aprende a jugar con el rompecabezas", dijo Soto, contando que ella misma vivió la experiencia de tener cuentas médicas enviadas a agencias de cobros cuando emigró por primera vez a Estados Unidos desde México.

"Muchos hospitales también tienen financiamiento para ayudarte con tu deuda. Solo tienes que llegar a la persona adecuada, porque parece que nadie quiere informarnos que esos programas existen", dijo. Y agregó que simplificar las facturas ayudaría mucho a muchos pacientes. Varios estados, incluidos Oregon, Illinois y Maryland, han intentado facilitar que las personas accedan a la ayuda financiera del hospital al requerir que los hospitales analicen proactivamente a los pacientes.

Defensores de pacientes y consumidores dicen que Colorado también podría restringir aún más el agresivo cobro de deudas, como las demandas, que siguen siendo comunes en el estado.

Nueva York, por ejemplo, prohibió el embargo de salarios después de descubrir que la práctica afectaba desproporcionadamente a las comunidades de bajos ingresos. En ese estado, la investigación también mostró que la carga de la deuda médica estaba afectando dos veces más a las comunidades minoritarias en comparación con las comunidades blancas no hispanas.

Elisabeth Benjamin, abogada de la Community Service Society de Nueva York, dijo que los hospitales estaban embargando los salarios de personas que trabajaban en Walmart y Taco Bell.

Maryland promulgó límites a las demandas por cobros de deudas después que defensores descubrieran que los pacientes que vivían en vecindarios predominantemente minoritarios estaban siendo víctimas de estas prácticas de manera desproporcionada.

Incluso en condados ricos, "los bolsillos que se están persiguiendo están en vecindarios mayoritariamente latinos", dijo Marceline White, directora ejecutiva del grupo de defensa Economic Action Maryland. El grupo de White ayudó a aprobar una ley que exige a los hospitales reembolsar a los pacientes de bajos ingresos y evitar el escenario que estaba viendo, en el cual los hospitales estaban "demandando a pacientes que deberían haber recibido atención gratuita".

Cobrando un alto precio

En Colorado, los legisladores están considerando una medida para mejorar el acceso de los pacientes a la ayuda financiera: una modificación al programa estatal Hospital Discounted Care, que haría que los hospitales fueran sitios de elegibilidad presunta para Medicaid.

Mientras tanto, algunos defensores de los consumidores dicen que las protecciones existentes no están funcionando lo suficientemente bien.

Los datos estatales muestran que los pacientes que recibían asistencia financiera eran principalmente blancos no hispanos. Y, aunque no está claro por qué, el 42% de los pacientes que podrían haber sido elegibles no fueron evaluados por los hospitales para recibir esa asistencia.

"Lo que está claro es que muchas personas no lo están logrando", dijo Bethany Pray, directora adjunta del Colorado Center on Law and Policy, un grupo de ayuda legal con sede en Denver que impulsó la legislación de atención con descuento.

Entre las comunidades de inmigrantes del estado, la deuda médica —y el miedo a la deuda— continúan cobrándose un alto precio.

"Lo que hemos escuchado de nuestros constituyentes es que la deuda médica a veces es la diferencia entre que tengan vivienda y que estén sin hogar", dijo Shontel Lewis, miembro del Concejo Municipal de Denver. Su distrito incluye el código postal 80216, otro lugar al norte del centro de la ciudad que está agobiado por una deuda médica generalizada.

Paola Becerra es una inmigrante que vive en Estados Unidos sin papeles y estaba embarazada cuando la trasladaron en autobús desde un refugio de Texas a Denver hace unos meses.

Dijo que se ha saltado las visitas de atención prenatal porque no podía pagar los copagos de $50. Tiene cobertura de salud de emergencia a través de Medicaid, que no cubre visitas preventivas, y ya acumuló alrededor de $1,600 en facturas.

"No sabía que iba a llegar embarazada", dijo Becerra, quien pensó que ya no podía concebir cuando salió de Colombia. "Tienes que renunciar a tu salud. O pago el alquiler o pago el hospital".

Para Rocío Leal, organizadora comunitaria en Boulder, la deuda médica se ha convertido en una característica definitoria de su vida.

A pesar del seguro de salud que tenía a través de su trabajo, Leal terminó con préstamos al día de alto interés para pagar por nacimientos saludables, embargo de salarios, citas prenatales que se perdió para ahorrar dinero y un puntaje de crédito "arruinado", que limitó sus opciones de vivienda.

Leal recordó momentos en los que pensó que serían desalojados y otros momentos en los que les cortaron la electricidad. "No es que lo estemos evitando y no queramos pagar. Es solo que a veces no tenemos la opción de pagar", dijo.

Agregó que, ahora, los peores momentos han quedado atrás. Está en una casa que ama, donde los vecinos traen pasteles para agradecer a su hijo por quitar la nieve de sus pórticos. Sus hijos están bien. Una hija obtuvo un promedio de calificaciones perfecto por segundo semestre consecutivo. Otra está tocando el violín en la orquesta escolar. Su tercera hija asiste a un club de arte. Y su hijo fue aceptado recientemente en la universidad para estudiar ingeniería biomédica.

Están cubiertos por Medicaid, lo que ha eliminado la incertidumbre en torno a las grandes facturas médicas. Pero la deuda médica sigue persiguiendo a Leal, que tiene diabetes tipo 2.

Cuando la remitieron al Boulder Medical Center para que le revisaran los ojos después del diagnóstico de diabetes, dijo que le dijeron que había una alerta roja junto a su nombre. La última vez que había interactuado con el centro médico había sido unos 12 años atrás, cuando no pudo pagar las facturas del pediatra.

"Estaba en proceso de mudanza y luego embargaron mis salarios", recordó. "Solo pensé, '¿Qué más debo?'".

Con el corazón latiendo con fuerza, colgó el teléfono.

El corresponsal senior de KFF Health News, Noam N. Levey, contribuyó para este informe.

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

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DENVER — In February, Norma Brambila’s teenage daughter wrote her a letter she now carries in her purse. It is a drawing of a rose, and a note encouraging Brambila to “keep fighting” her sickness and reminding her she’d someday join her family in heaven.

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“Diagnosis: Debt Colorado” is a reporting partnership among Colorado newsrooms led by KFF Health News and the Colorado News Collaborative that explores the scale, impact, and causes of medical debt in Colorado. The ongoing series builds on KFF Health News’ award-winning reporting on medical debt in the United States.

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Brambila, a community organizer who emigrated from Mexico a quarter-century ago, had only a sinus infection, but her children had never seen her so ill. “I was in bed for four days,” she said.

Lacking insurance, Brambila had avoided seeking care, hoping garlic and cinnamon would do the trick. But when she felt she could no longer breathe, she went to an emergency room. The $365 bill — enough to cover a week of groceries for her family — was more than she could afford, pushing her into debt. It also affected another decision she’d been weighing: whether to go to Mexico for surgery to remove the growth in her abdomen that she said is as big as a papaya.

Brambila lives in a southwestern Denver neighborhood called Westwood, a largely Hispanic, low-income community where many residents are immigrants. Westwood is also in a ZIP code, 80219, with some of the highest levels of medical debt in Colorado.

More than 1 in 5 adults there have historically had unpaid medical bills on their credit reports, more in line with West Virginia than the rest of Colorado, according to 2022 credit data analyzed by the nonprofit Urban Institute.

The area’s struggles reflect a paradox about Colorado. The state’s overall medical debt burden is lower than most. But racial and ethnic disparities are wider.

The gap between the debt burden in ZIP codes where residents are primarily Hispanic and/or non-white and ZIP codes that are primarily non-Hispanic white is twice what it is nationally. (Hispanics can be of any race or combination of races.)

Medical debt in Colorado is also concentrated in ZIP codes with relatively high shares of immigrants, many of whom are from Mexico. The Urban Institute found that 19% of adults in these places had medical debt on their credit reports, compared with 11% in communities with fewer immigrants.

Nationwide, about 100 million people have some form of health care debt, according to a KFF Health News-NPR investigation. This includes not only unpaid bills that end up in collections, but also those being paid off through installment plans, credit cards, or other loans.

Racial and ethnic gaps in medical debt exist nearly everywhere, data shows. But Colorado’s divide — on par with South Carolina’s, according to the Urban Institute data — exists even though the state has some of the most extensive medical debt protections in the country.

The gap threatens to deepen long-standing inequalities, say patient and consumer advocates. And it underscores the need for more action to address medical debt.

“It exacerbates racial wealth gaps,” said Berneta Haynes, a senior attorney with the nonprofit National Consumer Law Center who co-authored a report on medical debt and racial disparities. Haynes said too many Colorado residents, especially residents of color, are still caught in a vicious cycle in which they forgo medical care to avoid bills, leading to worse health and more debt.

Brambila said she has seen this cycle all too often around Westwood in her work as a community organizer. “I really would love to help people to pay their medical bills,” she said.

Health or Debt?

Roxana Burciaga, who grew up in Westwood and works at Mi Casa Resource Center there, said she hears questions at least once a week about how to pay for medical care.

Medical debt is a “big, big, big topic in our community,” she said. People don’t understand what their insurance actually covers or can’t get appointments for preventive care that suit their work schedules, she said.

Many, like Brambila, skip preventive care to avoid the bills and end up in the emergency room.

Doctors and nurses say they see the strains, as well.

Amber Koch-Laking, a family physician at Denver Health’s Westwood Family Health Center, part of the city’s public health system, said finances often come up in conversations with patients. Many patients try to get telehealth appointments to avoid the cost of going in person.

Adding to the crunch is Medicaid "unwinding", the process of states reexamining post-pandemic eligibility for health coverage for low-income people, Koch-Laking said. “They say, ‘Oh, I'm losing my Medicaid in three weeks, can you take care of these seven things without a visit?’ Or like, ‘Can we just do it over the portal, because I can't afford it?’”

Looking for the Right Fix

Colorado has taken steps to protect patients from medical debt, including expanding Medicaid coverage through the 2010 Affordable Care Act. More recently, state leaders required hospitals to expand financial assistance for low-income patients and barred all medical debts from consumers’ credit reports.

But the complexities of many assistance programs remain a major barrier for immigrants and others with limited English, said Julissa Soto, a Denver-based health equity consultant focused on Latino Coloradans.

Many patients, for example, may not know they can seek help with medical bills from the state or community nonprofits.

“The health care system is a puzzle. You better learn how to play with puzzles,” said Soto, who said she was sent to collections for medical bills when she first immigrated to the U.S. from Mexico. “Many hospitals also have funding to help out with your debt. You just have to get to the right person, because it seems that nobody wants to let us know that those programs exist.”

She said simplifying bills would go a long way to helping many patients.

Several states, including Oregon, Maryland, and Illinois, have tried to make it easier for people to access hospital financial aid by requiring hospitals to proactively screen patients.

Patient and consumer advocates say Colorado could also further restrict aggressive debt collection, such as lawsuits, which remain common in the state.

New York, for example, banned wage garnishment after finding that the practice disproportionately affected low-income communities. Research there also showed that medical debt burden was falling about twice as hard on communities of color as it was on non-Hispanic white communities.

Elisabeth Benjamin, a lawyer with the Community Service Society of New York, said hospitals were garnishing the wages of people working at Walmart and Taco Bell.

Maryland enacted limits on debt collection lawsuits after advocates found that patients living in predominantly minority neighborhoods were being disproportionately targeted. Even in wealthy counties, “the pockets that are being pursued are majority Latino neighborhoods,” said Marceline White, executive director of the advocacy group Economic Action Maryland.

White's group helped pass a law requiring hospitals to pay back low-income patients and avoid the scenario she was seeing, in which hospitals were “suing patients who should have gotten free care.”

Exacting a Heavy Toll

In Colorado, lawmakers are considering a measure to improve patients’ access to financial aid: a modification to the state’s Hospital Discounted Care program that would make hospitals presumptive eligibility sites for Medicaid.

Meanwhile, some consumer advocates say existing protections aren’t working well enough.

State data shows patients who received financial assistance were primarily white. And, though it’s unclear why, 42% of patients who may have been eligible were not fully screened by hospitals for financial assistance.

“What is clear is that a lot of people are not making it through,” said Bethany Pray, deputy director of the Colorado Center on Law and Policy, a Denver-based legal aid group that pushed for the discounted care legislation.

Within the state’s immigrant communities, medical debt — and the fear of debt — continues to take a heavy toll.

“What we’ve heard from our constituents is that medical debt sometimes is the difference between them being housed and them being unhoused,” said Denver City Council member Shontel Lewis. Her district includes the 80216 ZIP code, another place north of the city center that is saddled with widespread medical debt.

Paola Becerra is an immigrant living in the U.S. without legal permission who was pregnant when she was bused to Denver from a Texas shelter a few months ago.

She said she has skipped prenatal care visits because she couldn’t afford the $50 copays. She has emergency health coverage through Medicaid, but it doesn’t cover preventive visits, and she has already racked up about $1,600 in bills.

“I didn't know that I was going to arrive pregnant,” said Becerra, who thought she could no longer conceive when she left Colombia. “You have to give up your health. Either I pay the rent, or I pay the hospital.”

For Rocio Leal, a community organizer in Boulder, medical debt has become a defining feature of her life.

Despite the health insurance she had through her job, Leal ended up with high-interest payday loans to pay for healthy births, wage garnishment, prenatal appointments she missed to save money, and a “ruined” credit score, which limited her housing options.

Leal recalled times she thought they’d be evicted and other times the electricity was cut off. “It's not like we're avoiding and don't want to pay. It's just sometimes we don't have an option to pay,” she said.

Leal said the worst times are behind her now. She’s in a home she loves, where neighbors bring cakes over to thank her son for shoveling the snow off their driveway.

Her children are doing well. One daughter got a perfect GPA for the second semester in a row. Another is playing violin in the school orchestra. Her third daughter attends art club. And her son was recently accepted to college for biomedical engineering. They are covered by Medicaid, which has removed the uncertainty around big medical bills.

But medical debt still haunts Leal, who has Type 2 diabetes.

When she was referred to Boulder Medical Center to get her eyes checked after the diabetes diagnosis, she said she was told there was a red flag by her name. The last time she’d interacted with the medical center was about a dozen years earlier, when she’d been unable to pay pediatrician bills.

“I was in the process of moving and then my wages were garnished,” she recalled. “I just was like, ‘What else do I owe?’”

Heart pounding, she hung up the phone.

KFF Health News senior correspondent Noam N. Levey contributed to this report.

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

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Some consumers covered by Affordable Care Act insurance plans are being switched from one plan to another without their express permission, potentially leaving them unable to see their doctors or fill prescriptions. Some face large IRS bills for back taxes.

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Unauthorized enrollment or plan-switching is emerging as a serious challenge for the ACA, also known as Obamacare. Brokers say the ease with which rogue agents can get into policyholder accounts in the 32 states served by the federal marketplace plays a major role in the problem, according to an investigation by KFF Health News.

Indeed, armed with only a person’s name, date of birth, and state, a licensed agent can access a policyholder’s coverage through the federal exchange or its direct enrollment platforms. It’s harder to do through state ACA markets, because they often require additional information.

“It’s rampant. It’s horrible,” said Ronnell Nolan, president of Health Agents for America, a nonprofit trade association representing independent insurance brokers.

The growing outcry from agents who have had their clients switched by rivals — which can steer monthly commissions to the new agent — casts a shadow on what otherwise has been a record year for ACA enrollment. More than 21 million people signed up for 2024 coverage.

Federal regulators are aware of the increase in unauthorized switching and say they have taken steps to combat it. It’s unclear, though, if these efforts will be enough.

On Feb. 26, the Centers for Medicare & Medicaid Services sent a “plan switch update” to industry representatives acknowledging “a large number” of 2024 cases and outlining some of its technical efforts to resolve problems when complaints are lodged.

“CMS is committed to protecting consumers in the marketplace,” said Jeff Wu, deputy director for policy for CMS’ Center for Consumer Information & Insurance Oversight, in a written statement to KFF Health News.

His office refused to provide details on how many complaints it has seen or the number of agents it has sanctioned but his statement said when action is taken, CMS reports it to state insurance departments, whose authority includes revoking licenses.

Wu did not answer specific questions about whether two-factor authentication or other safeguards would be added to the federal website, though he wrote that CMS is “actively considering further regulatory and technological solutions to some of these problems.”

In June, new rules kicked in that require brokers to get policyholders’ written or recorded verbal consent before making changes, although brokers said they are rarely asked for those documents.

Finding Out the Hard Way

Some unwitting enrollees, like Michael Debriae, a restaurant server who lives in Charlotte, North Carolina, not only end up in plans they didn’t choose but also bear a tax burden.

That happens when enrollees are signed up for coverage that includes premium tax credits paid by the government to insurers, even though the enrollee is ineligible, either because their income was misstated by the broker making the switch, or they had job-based insurance, like Debriae.

Unbeknownst to him, an agent in Florida with whom he had never spoken enrolled him in an ACA plan in March 2023. It was two months after he canceled his Obamacare coverage because he was able to get health insurance through his job. In June, he discovered he had a new ACA policy when his longtime pharmacy said it could not fill a 90-day prescription, which it had done with no problem in the past.

“That’s when I realized something horribly wrong had happened,” said Debriae.

Debriae got contact information for the Florida broker, but when he called, the office said the agent no longer worked there. He filed a complaint with the federal marketplace and canceled the plan. But he still owed the IRS part of the $2,445 in premium tax credits paid to the insurer from March until July on his behalf.

To be sure, some switches could be legitimate, when enrollees choose a different broker or plan. And agents do have a vested interest in raising the issue. They lose out on commissions when their clients are switched by other agents. But brokers whose clients have been switched through unauthorized transactions say the real losers are consumers.

“People literally losing their plans is fraud, absolute fraud, not a squabble between agents,” said Leslie Shields, an insurance broker in Fort Worth, Texas.

Patients’ new plans might not include their doctors or might come with higher deductibles than their former coverage. Because the agent on the policy is generally switched, too, enrollees don’t know whom to call for help.

“You have surgeries that can’t happen, providers that can’t be seen, or have been changed,” said Shields. “It’s happened in the past, but now it’s literally the worst I’ve seen.”

Ease of access to policyholders’ accounts on the federal marketplace is a double-edged sword, agents say: It aids enrollment, but also makes it easier to switch plans without consent.

“Those bad eggs now have access to all this private information about an individual,” including household income, Social Security numbers, and dependents, said Joshua Brooker, a broker who follows the issue closely as chair of a marketplace committee for the National Association of Benefits and Insurance Professionals, a trade group.

Complaints gained momentum during the most recent open enrollment period, agents say. One worker in a government office that helps oversee operations of the federal exchange told KFF Health News of personally handling more than 1,200 complaints about unauthorized switches or enrollments in the past three months, averaging about 20 a day. About 30 co-workers are working on similar complaints. It can take multiple days to resolve the most urgent cases, and two to four weeks for those deemed less urgent, the worker said.

Florida, Georgia, and Texas appear to be plan-switching hotbeds, agents say. Florida and Texas officials referred questions to federal regulators. Bryce Rawson, press secretary for the Georgia Department of Insurance, says the state saw no switching complaints last year and has about 30 so far in 2024, a small number but one it is taking seriously: “It’s still an active and ongoing investigation.”

By contrast, states that run their own marketplaces — there are 18 and the District of Columbia that do — have been more successful in thwarting such efforts because they require more information before a policy can be accessed, Brooker said.

In Colorado, for example, customers create accounts on the state’s online market and can choose which brokers have access. Pennsylvania has a similar setup. California sends a one-time password to the consumer, who then gives it to the agent before any changes can be made.

Adding such safeguards to healthcare.gov could slow the enrollment process. Federal regulators are “trying to thread a needle between making sure people can get access to coverage and also providing enough of a barrier to capture anyone who is coming in and acting nefariously,” said Brooker.

How Does It Happen?

Many people have no idea how they were targeted, agents say.

Jonathan Kanfer, a West Palm Beach, Florida, agent, suspects names and lists of potential clients are being circulated to agents willing to bend the rules. He said his agency has lost 700 clients to switching.

The agents doing the switching “don’t care about the people,” Kanfer said, only the money, which can amount to a monthly commission of roughly $20 to $25 per enrollee.

“Two weeks ago, someone telemarketed me, gave me a number to call to get leads for Obamacare,” said Kanfer, who turned down the offer. The person told him: “You don’t even have to speak with the people.”

Brokers can get a monthly commission of roughly $20 to $25 per enrollee.

“Two weeks ago, someone telemarketed me, gave me a number to call to get leads for Obamacare,” Kanfer said. The person told him: “You don’t even have to speak with the people.”

Online or social media advertising is a way some outfits troll for prospects, who then end up on lists sold to brokers or are contacted directly by agents. Such lists are not illegal. The problem is the ads are often vague, and consumers responding may not realize the ads are about health insurance or might result in their policies being changed. Such ads promise free “subsidies” worth up to $6,400, often implying the money can help with groceries, rent, or gas. Some do mention “zero-dollar” health insurance.

Yet agents say the ads are misleading because the “subsidies” are actually the premium tax credits many people who enroll in ACA plans are eligible for, based on their income.

“They’re portraying it like it’s money going into your pocket,” said Lauren Jenkins, who runs an insurance brokerage in Coweta, Oklahoma, and has seen about 50 switching cases in recent months. But the money goes to insurers to offset the price of the new plan — which the consumer may not have wanted.

Ambetter Health — a division of Centene that offers ACA plans in more than two dozen states — sent email alerts to brokers in September and November. One noted a jump in complaints “stemming from misleading advertisements.” Another warned of “termination actions” against bad actors and directed agents not to collect consumer information or consent via “online forms or social media ads.”

In response to the switching, Ambetter also instituted a “lock” on policies starting at midnight on Dec. 31, meaning the agent on the policy by that deadline would remain on it for all of 2024, according to an email the insurer sent to brokers.

Results are mixed.

Adam Bercowicz, a licensed independent broker in Fort Lauderdale, Florida, said he and his staff worked New Year’s Eve, monitoring their client lists and watching as some were switched before their eyes.

“If I saw one of my clients was stolen from me at, let’s say, 11:57 p.m., I put myself back on,” said Bercowicz, who estimates he’s had 300 to 400 policies overtaken by other agents not connected to his staff in recent months. “And by 11:58 — a minute later — they were already switched back.”

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

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This story can be republished for free (details).