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.

A new analysis finds that graduating medical students were less likely to apply this year for residency training in states that ban or restrict abortion. That was true not only for aspiring OB-GYNs and others who regularly treat pregnant patients, but for all specialties.

Meanwhile, another study has found that more than 4 million children have been terminated from Medicaid or the Children’s Health Insurance Program since the federal government ended a covid-related provision barring such disenrollments. The study estimates about three-quarters of those children were still eligible and were kicked off for procedural reasons.

This week’s panelists are Julie Rovner of KFF Health News, Lauren Weber of The Washington Post, Joanne Kenen of the Johns Hopkins University schools of nursing and public health and Politico Magazine, and Anna Edney of Bloomberg News.

Panelists Anna Edney Bloomberg @annaedney Read Anna's stories. Joanne Kenen Johns Hopkins University and Politico @JoanneKenen Read Joanne's articles. Lauren Weber The Washington Post @LaurenWeberHP Read Lauren's stories.

Among the takeaways from this week’s episode:

• More medical students are avoiding applying to residency programs in states with abortion restrictions. That could worsen access problems in areas that already don’t have enough doctors and other health providers in their communities.
• New threats to abortion care in the United States include not only state laws penalizing abortion pill possession and abortion travel, but also online misinformation campaigns — which are trying to discourage people from supporting abortion ballot measures by telling them lies about how their information might be used.
• The latest news is out on the fate of Medicare, and a pretty robust economy appears to have bought the program’s trust fund another five years. Still, its overall health depends on a long-term solution — and a long-term solution depends on Congress.
• In Medicaid expansion news, Mississippi lawmakers’ latest attempt to expand the program was unsuccessful, and a report shows two other nonexpansion states — Texas and Florida — account for about 40% of the 4 million kids who were dropped from Medicaid and CHIP last year. By not expanding Medicaid, holdout states say no to billions of federal dollars that could be used to cover health care for low-income residents.
• Finally, the bankruptcy of the hospital chain Steward Health Care tells a striking story of what happens when private equity invests in health care.

Also this week, Rovner interviews KFF Health News’ Katheryn Houghton, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” feature, about a patient who went outside his insurance network for a surgery and thought he had covered all his bases. It turned out he hadn’t. If you have an outrageous or incomprehensible medical bill you’d like to share with us, you can do that here.

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

Julie Rovner: The Nation’s “The Abortion Pill Underground,” by Amy Littlefield.

Joanne Kenen: The New York Times’ “In Medicine, the Morally Unthinkable Too Easily Comes to Seem Normal,” by Carl Elliott.

Anna Edney: ProPublica’s “Facing Unchecked Syphilis Outbreak, Great Plains Tribes Sought Federal Help. Months Later, No One Has Responded,” by Anna Maria Barry-Jester.

Lauren Weber: Stat’s “NYU Professors Who Defended Vaping Didn’t Disclose Ties to Juul, Documents Show,” by Nicholas Florko.

Also mentioned on this week’s podcast:

• KFF Health News’ “Medical Residents Are Increasingly Avoiding States With Abortion Restrictions,” by Julie Rovner and Rachana Pradhan.
• CNBC’s “Abortion Bans Drive Away up to Half of Young Talent, New CNBC/Generation Lab Youth Survey Finds,” by Jason Gewirtz.
• The Washington Post’s “Texas Man Files Legal Action To Probe Ex-Partner’s Out-of-State Abortion,” by Caroline Kitchener.

Credits Francis Ying Audio producer Emmarie Huetteman Editor

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Isabella Rosario Blum was wrapping up medical school and considering residency programs to become a family practice physician when she got some frank advice: If she wanted to be trained to provide abortions, she shouldn’t stay in Arizona.

Blum turned to programs mostly in states where abortion access — and, by extension, abortion training — is likely to remain protected, like California, Colorado, and New Mexico. Arizona has enacted a law banning most abortions after 15 weeks.

“I would really like to have all the training possible,” she said, “so of course that would have still been a limitation.”

In June, she will start her residency at Swedish Cherry Hill hospital in Seattle.

According to new statistics from the Association of American Medical Colleges, for the second year in a row, students graduating from U.S. medical schools were less likely to apply this year for residency positions in states with abortion bans and other significant abortion restrictions.

Since the Supreme Court in 2022 overturned the constitutional right to an abortion, state fights over abortion access have created plenty of uncertainty for pregnant patients and their doctors. But that uncertainty has also bled into the world of medical education, forcing some new doctors to factor state abortion laws into their decisions about where to begin their careers.

Fourteen states, primarily in the Midwest and South, have banned nearly all abortions. The new analysis by the AAMC — a preliminary copy of which was exclusively reviewed by KFF Health News before its public release — found that the number of applicants to residency programs in states with near-total abortion bans declined by 4.2%, compared with a 0.6% drop in states where abortion remains legal.

Notably, the AAMC’s findings illuminate the broader problems abortion bans can create for a state’s medical community, particularly in an era of provider shortages: The organization tracked a larger decrease in interest in residencies in states with abortion restrictions not only among those in specialties most likely to treat pregnant patients, like OB-GYNs and emergency room doctors, but also among aspiring doctors in other specialties.

“It should be concerning for states with severe restrictions on reproductive rights that so many new physicians — across specialties — are choosing to apply to other states for training instead,” wrote Atul Grover, executive director of the AAMC’s Research and Action Institute.

The AAMC analysis found the number of applicants to OB-GYN residency programs in abortion ban states dropped by 6.7%, compared with a 0.4% increase in states where abortion remains legal. For internal medicine, the drop observed in abortion ban states was over five times as much as in states where abortion is legal.

In its analysis, the AAMC said an ongoing decline in interest in ban states among new doctors ultimately “may negatively affect access to care in those states.”

Jack Resneck Jr., immediate past president of the American Medical Association, said the data demonstrates yet another consequence of the post-Roe v. Wade era.

The AAMC analysis notes that even in states with abortion bans, residency programs are filling their positions — mostly because there are more graduating medical students in the U.S. and abroad than there are residency slots.

Still, Resneck said, “we’re extraordinarily worried.” For example, physicians without adequate abortion training may not be able to manage miscarriages, ectopic pregnancies, or potential complications such as infection or hemorrhaging that could stem from pregnancy loss.

Those who work with students and residents say their observations support the AAMC’s findings. “People don’t want to go to a place where evidence-based practice and human rights in general are curtailed,” said Beverly Gray, an associate professor of obstetrics and gynecology at Duke University School of Medicine.

Abortion in North Carolina is banned in nearly all cases after 12 weeks. Women who experience unexpected complications or discover their baby has potentially fatal birth defects later in pregnancy may not be able to receive care there.

Gray said she worries that even though Duke is a highly sought training destination for medical residents, the abortion ban “impacts whether we have the best and brightest coming to North Carolina.”

Rohini Kousalya Siva will start her obstetrics and gynecology residency at MedStar Washington Hospital Center in Washington, D.C., this year. She said she did not consider programs in states that have banned or severely restricted abortion, applying instead to programs in Maryland, New Hampshire, New York, and Washington, D.C.

“We’re physicians,” said Kousalya Siva, who attended medical school in Virginia and was previously president of the American Medical Student Association. “We’re supposed to be giving the best evidence-based care to our patients, and we can’t do that if we haven’t been given abortion training.”

Another consideration: Most graduating medical students are in their 20s, “the age when people are starting to think about putting down roots and starting families,” said Gray, who added that she is noticing many more students ask about politics during their residency interviews.

And because most young doctors make their careers in the state where they do their residencies, “people don’t feel safe potentially having their own pregnancies living in those states” with severe restrictions, said Debra Stulberg, chair of the Department of Family Medicine at the University of Chicago.

Stulberg and others worry that this self-selection away from states with abortion restrictions will exacerbate the shortages of physicians in rural and underserved areas.

“The geographic misalignment between where the needs are and where people are choosing to go is really problematic,” she said. “We don’t need people further concentrating in urban areas where there’s already good access.”

After attending medical school in Tennessee, which has adopted one of the most sweeping abortion bans in the nation, Hannah Light-Olson will start her OB-GYN residency at the University of California-San Francisco this summer.

It was not an easy decision, she said. “I feel some guilt and sadness leaving a situation where I feel like I could be of some help,” she said. “I feel deeply indebted to the program that trained me, and to the patients of Tennessee.”

Light-Olson said some of her fellow students applied to programs in abortion ban states “because they think we need pro-choice providers in restrictive states now more than ever.” In fact, she said, she also applied to programs in ban states when she was confident the program had a way to provide abortion training.

“I felt like there was no perfect, 100% guarantee; we’ve seen how fast things can change,” she said. “I don’t feel particularly confident that California and New York aren’t going to be under threat, too.”

As a condition of a scholarship she received for medical school, Blum said, she will have to return to Arizona to practice, and it is unclear what abortion access will look like then. But she is worried about long-term impacts.

“Residents, if they can’t get the training in the state, then they’re probably less likely to settle down and work in the state as well,” she said.

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The Biden administration’s plan to set minimum staffing levels for nursing homes prompted comments from more than 46,500 people and organizations — including residents of homes and nurses with harrowing stories about conditions inside.

• One resident purchased a bullhorn with a siren to get nurses’ and aides’ attention because he was often left sitting in his own stool, one commenter recounted.
• Nurses at one facility declared a “med holiday,” according to a dietitian, and threw away all the drugs for a shift because they didn’t have time to pass them out.
• A day shift nurse found a resident choking on vomit and having seizures after a night when there had been only one nurse and one aide on duty — for 100 residents.

Hundreds of comments like these cemented the resolve of officials at the Centers for Medicare and Medicaid Services last month to stick to plans to set minimum numbers of registered nurses and nurse aides for homes, despite the industry’s insistence it’s infeasible. CMS added a third mandate for minimum total staffing.

The agency also toughened requirements for the self-assessments each home must perform to determine whether they have enough skilled workers to properly care for their residents. The assessment can mean a home with residents who are especially ill or in need of extensive assistance should exceed minimum staffing mandates.

President Biden’s crackdown on nursing home staffing is among the most significant health-care regulatory moves he’s pursuing in what could be his last year in the White House. That it comes in an election year, when the president is counting on improving his support among older voters and their families, only raises the stakes — though nursing homes have until 2026 to come into compliance. Labor unions representing nurses and aides have strongly backed the plan.

Still, CMS rebuffed calls from resident advocates to require all nursing homes to meet the new requirements.

The industry as well as rank-and-file nurses raised concerns about finding enough staff to meet the new federal requirement. A licensed practical nurse from rural Minnesota wrote: “We currently offer sign on bonuses, referral bonuses, higher wages than we have ever had, and still no applications are received.”

CMS is allowing nursing homes exemptions from the staffing minimums if they are in areas with workforce shortages. CMS also will allow homes to request an exemption from one of the toughest mandates in the regulation: having a registered nurse on-site around-the-clock. If they’re in an area with a shortage of RNs, they can request to have one on-site for just 16 hours a day. (That’s still double the existing requirement.) CMS estimates that a quarter of the nation’s 15,000 nursing homes will end up obtaining exemptions from part or all of the staffing rules

The final regulation hasn’t entirely pleased anyone. Most advocates for patients still think the staffing minimums are too low and will allow some homes to continue to provide substandard care. And the nursing home industry says it can’t find or afford the extra staff — and its lobbyists are working Congress, and probably the White House should Biden lose, to overturn the rules.

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In his 2015 State of the Union address, President Barack Obama announced a precision medicine initiative that would later be known as the All of Us program. The research, now well underway at the National Institutes of Health, aims to analyze the DNA of at least 1 million people across the United States to build a diverse health database.

The key word there is “diverse.” So far, the program has collected more than 560,000 DNA samples, and nearly half of participants identify as being part of a racial or ethnic minority group.

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.

“We are actually looking to overrepresent” these previously marginalized groups, explained Martin Mendoza, director of health equity for All of Us, which will continue to enroll participants through at least 2026, when researchers intend to evaluate the next phases of the project.

Their success to date is remarkable for a few reasons. Participation in biomedical research is typically low in diversity. And when it comes to genetics research specifically, diversity has been nearly nonexistent.

Since the completion more than 20 years ago of the Human Genome Project, which mapped most human genes for the first time, nearly 90 percent of genomics studies have been conducted using DNA from participants of European descent, research shows.

Humans of all races and ethnicities are 99 percent genetically identical. But even small differences in our DNA can have a profound impact on our health.

Here’s an example: A few years ago, researchers found that some Black patients had been misdiagnosed with a potentially fatal heart condition called hypertrophic cardiomyopathy because they’d tested positive for genetic variants that were thought to be harmful. But it turns out the variants, more common among Black Americans than among White Americans, are likely harmless. The diagnosis, though, is life-altering — patients with hypertrophic cardiomyopathy have traditionally been discouraged from competing in sports, for example.

Such misdiagnoses can be avoided if “even modest numbers of people from diverse populations are included in sequence databases,” NIH wrote.

Easier said than done. A genetics research project underway in South Carolina called In Our DNA SC is struggling to recruit enough Black participants. The scientists behind the project said two years ago they aimed to collect samples reflecting the diversity of the state, where 27 percent of residents identify as Black or African American.

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

To date, only about 12 percent of participants who provided socio-demographic data identify as Black. An additional 5 percent identify as belonging to another racial minority.

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When doctors began using the drug sotorasib in 2021 with high expectations for its innovative approach to attacking lung cancer, retired medical technician Don Crosslin was an early beneficiary. Crosslin started the drug that July. His tumors shrank, then stabilized.

But while the drug has helped keep him alive, its side effects have gradually narrowed the confines of his life, said Crosslin, 76, who lives in Ocala, Florida: “My appetite has been minimal. I’m very weak. I walk my dogs and get around a bit, but I haven’t been able to golf since last July.”

He wonders whether he’d do better on a lower dose, “but I do what my oncologist tells me to do,” Crosslin said. Every day, he takes eight of the 120-milligram pills, sold under Amgen’s brand name Lumakras.

Crosslin’s concern lies at the heart of an FDA effort to make cancer drugs less toxic and more effective. Cancer drug trials are structured to promote high doses, which then become routine patient care. In the face of evidence that thousands of patients become so ill that they skip doses or stop taking the drugs — thereby risking resurgence of their cancers — the FDA has begun requiring companies to pinpoint the right dosage before they reach patients.

The initiative, Project Optimus, launched in 2021 just as Amgen was seeking to market sotorasib. At the time, the FDA’s leading cancer drug regulator, Richard Pazdur, co-authored an editorial in the New England Journal of Medicine that said Amgen’s trials of the $20,000-a-month drug were “hampered by a lack of robust dose exploration.”

The FDA conditionally approved sotorasib but required Amgen to conduct a study comparing the labeled dosage of 960 mg with a dosage of 240 mg. The trial, published in November, showed that the 960-mg dose may have given patients a month more of life, on average, but caused more severe side effects than the lower dose.

Amgen is keeping the 960-mg dosage as it conducts further tests to get final approval for the drug, spokesperson Elissa Snook said, adding that the dose showed superiority in one study. Whether medically justified or not, the heavier dosage allows the company to protect 75% of its revenue from the drug, which brought in nearly $200 million in the United States last year.

And there appears to be nothing the FDA can do about it.

“There’s a gap in FDA’s authority that results in patients getting excess doses of a drug at excess costs,” said Mark Ratain, a University of Chicago oncologist who has pushed for more accurate cancer drug dosing. “We should do something about this.”

Deciding on Dosage

It may be too late for the FDA to change the sotorasib dosage, although in principle it could demand a new regimen before granting final approval, perhaps in 2028. Under Project Optimus, however, the agency is doing something about dosage guidelines for future drugs. It is stressing dose optimization in its meetings with companies, particularly as they prepare to test drugs on patients for the first time, spokesperson Lauren-Jei McCarthy said.

“When you go in front of FDA with a plan to approve your drug now, they are going to address dosing studies,” said Julie Gralow, chief medical officer of the American Society of Clinical Oncology. “A lot of companies are struggling with this.”

That’s largely because the new requirements add six months to a year and millions in drug development costs, said Julie Bullock, a former FDA drug reviewer who advocated for more extensive dosing studies and is now senior vice president at Certara, a drug development consultancy.

In part, Project Optimus represents an effort to manage the faults of the FDA’s accelerated approval process, begun in 1992. While the process gets innovative drugs to patients more quickly, some medicines have proved lackluster or had unacceptable side effects.

That’s especially true of the newer pills to treat cancer, said Donald Harvey, an Emory University pharmacology professor, who has led or contributed to more than 100 early-phase cancer trials.

A study released last month in the Journal of the American Medical Association showed that 41% of the cancer drugs granted accelerated approval from 2013 to 2017 did not improve overall survival or quality of life after five years.

Many of these drugs flop because they must be given at toxic dosages to have any effect, Harvey said, adding that sotorasib might work better if the company had found an appropriate dosage earlier on.

“Sotorasib is a poster child for incredibly bad development,” Harvey said. The drug was the first to target the KRAS G12C mutation, which drives about 15% of lung cancers and was considered “undruggable” until University of California-San Francisco chemist Kevan Shokat figured out how to attack it in 2012.

Given the specificity of sotorasib’s target, Harvey said, Amgen could have found a lower dosage. “Instead, they followed the old model and said, ‘We’re going to push the dose up until we see a major side effect.’ They didn’t need to do that. They just needed more experience with a lower dose.”

The 960-mg dose “is really tough on patients,” said Yale University oncologist and assistant professor Michael Grant. “They get a lot of nausea and other GI side effects that are not pleasant. It hurts their quality of life.”

The FDA noted in its review of sotorasib that in phase 1 studies tumors shrank when exposed to as little as a fifth of the 960-mg daily dose Amgen selected. At all doses tested in that early trial, the drug reached roughly the same concentrations in the blood, which suggested that at higher doses the drug was mostly just intensifying side effects like diarrhea, vomiting, and mouth sores.

For most classes of drugs, companies spend considerable time in phases 1 and 2 of development, homing in on the right dosage. “No one would think of dosing a statin or antibiotic at the highest tolerable dose,” Ratain said.

Things are different in cancer drug creation, whose approach originated with chemotherapy, which damages as many cancer cells as possible, wrecking plenty of healthy tissue in the bargain. Typically, a company’s first series of cancer drug trials involve escalating doses in small groups of patients until something like a quarter of them get seriously ill. That “maximum tolerated dose” is then employed in more advanced clinical trials, and goes on the drug’s label. Once a drug is approved, a doctor can “go off-label” and alter the dosage, but most are leery of doing so.

Patients can find the experience rougher than advertised. During clinical trials, the side effects of the cancer drug osimertinib (Tagrisso) were listed as tolerable and manageable, said Jill Feldman, a lung cancer patient and advocate. “That killed me. After two months on that drug, I had lost 15 pounds, had sores in my mouth and down my throat, stomach stuff. It was horrible.”

Some practitioners, at least, have responded to the FDA’s cues on sotorasib. In the Kaiser Permanente health system, lung cancer specialists start with a lower dose of the drug, spokesperson Stephen Shivinsky said.

Smaller Doses — And Revenue

Amgen was clearly aware of the advantages of the 240-mg dosage before it sought FDA approval: It filed a provisional patent application on that dosage before the agency gave breakthrough approval for the drug at 960 mg. The company doesn’t appear to have disclosed the patent filing to investors or the FDA. McCarthy said the FDA was prohibited by law from discussing the particulars of its sotorasib regulation plans.

Switching to a 240-mg dosage could register a huge hit to Amgen’s revenue. The company markets the drug at more than $20,000 for a month of 960-mg daily doses. Each patient who could get by with a quarter of that would trim the company’s revenue by roughly $180,000 a year.

Amgen declined to comment on the patent issue or to make an official available to discuss the dosage and pricing issues.

Crosslin, who depends on Social Security for his income, couldn’t afford the $3,000 a month that Medicare required him to pay for sotorasib, but he has received assistance from Amgen and a charity that covers costs for patients below a certain income.

While the drug has worked well for Crosslin and other patients, its overall modest impact on lung cancer suggests that $5,000, rather than $20,000, might be a more appropriate price, Ratain said.

In the company’s phase 3 clinical trial for advanced lung cancer patients, sotorasib kept patients alive for about a month longer than docetaxel, the current, highly toxic standard of care. Docetaxel is a generic drug for which Medicare pays about $1 per injection. The trial was so unconvincing that the FDA sent Amgen back to do another.

Ratain, a staunch critic of Amgen’s handling of sotorasib, told Centers for Medicare & Medicaid Services officials at a recent meeting that they should pay for sotorasib on a basis of 240 mg per day. But CMS would do that only “if there is a change in the drug’s FDA-approved dosage,” spokesperson Aaron Smith said.

Drug companies generally don’t want to spend money on trials like the one the FDA ordered on sotorasib. In 2018, Ratain and other researchers used their institutions’ funding to conduct a dosing trial on the prostate cancer drug abiraterone, marketed under the brand name Zytiga by Johnson & Johnson. They found that taking one 250-mg pill with food was just as effective as taking four on an empty stomach, as the label called for.

Although J&J hasn’t changed the Zytiga label, the evidence generated in that trial was strong enough for the standards-setting National Comprehensive Cancer Network to change its recommendations.

Post-marketing studies like that one are hard to conduct, Emory’s Harvey said. Patients are reluctant to join a trial in which they may have to take a lower dosage, since most people tend to believe “the more the better,” he said.

“It’s better for everyone to find the right dose before a drug is out on the market,” Harvey said. “Better for the patient, and better for the company, which can sell more of a good drug if the patients aren’t getting sick and no longer taking it.”

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President Joe Biden counts among his accomplishments the record-high number of people, more than 21 million, who enrolled in Obamacare plans this year. Behind the scenes, however, federal regulators are contending with a problem that affects people’s coverage: rogue brokers who have signed people up for Affordable Care Act plans, or switched them into new ones, without their permission.

Fighting the problem presents tension for the administration: how to thwart the bad actors without affecting ACA sign-ups.

Complaints about these unauthorized changes — which can cause affected policyholders to lose access to medical care, pay higher deductibles, or even incur surprise tax bills — rose sharply in recent months, according to brokers who contacted KFF Health News and federal workers who asked not to be identified.

Ronnell Nolan, president and CEO of the trade association Health Agents for America, said her group has suggested to the Centers for Medicare & Medicaid Services that it add two-factor authentication to healthcare.gov or send text alerts to consumers if an agent tries to access their accounts. But the agency told her it doesn’t always have up-to-date contact information.

“We’ve given them a whole host of ideas,” she said. “They say, ‘Be careful what you wish for.’ But we don’t mind going an extra step if you can stop this fraud and abuse, because clients are being hurt.”

Some consumers are pursued when they respond to misleading social media marketing ads promising government subsidies, but most have no idea how they fell victim to plan-switching. Problems seem concentrated in the 32 states using the federal exchange.

Federal regulators have declined to say how many complaints about unauthorized sign-ups or plan switches they’ve received, or how many insurance agents they’ve sanctioned as a result. But the problem is big enough that CMS says it’s working on technological and regulatory solutions. Affected consumers and agents have filed a civil lawsuit in federal district court in Florida against private-sector firms allegedly involved in unauthorized switching schemes.

Biden has pushed hard to make permanent the enhanced subsidies first put in place during the covid pandemic that, along with other steps including increased federal funding for outreach, helped fuel the strong enrollment growth. Biden contrasts his support for the ACA with the stance of former President Donald Trump, who supported attempts to repeal most of the law and presided over funding cuts and declining enrollment.

Most proposed solutions to the rogue-agent problem involve making it more difficult for agents to access policyholder information or requiring wider use of identity questions tied to enrollees’ credit history. The latter could be stumbling blocks for low-income people or those with limited financial records, said Sabrina Corlette, co-director of the Center on Health Insurance Reforms at Georgetown University.

“That is the knife edge the administration has to walk,” said Corlette, “protecting consumers from fraudulent behavior while at the same time making sure there aren’t too many barriers.”

Jeff Wu, acting director of the Center for Consumer Information & Insurance Oversight, said in a statement that the agency is evaluating options on such factors as how effective they would be, their impact on consumers’ ability to enroll, and how fast they could be implemented.

The agency is also working closely, he wrote, with insurance companies, state insurance departments, and law enforcement “so that agents violating CMS rules or committing fraud face consequences.” And it is reaching out to states that run their own ACA markets for ideas.

That’s because Washington, D.C., and the 18 states that run their own ACA marketplaces have reported far fewer complaints about unauthorized enrollment and plan-switching. Most include layers of security in addition to those the federal marketplace has in place — some use two-factor authentication — before agents can access policyholder information.

California, for example, allows consumers to designate an agent and to “log in and add or remove an agent at will,” said Robert Kingston, interim director of outreach and sales for Covered California, the state’s ACA marketplace. The state can also send consumers a one-time passcode to share with an agent of their choice. Consumers in Colorado and Pennsylvania can similarly designate specific agents to access their accounts.

By contrast, agents can more easily access policyholder information when using private-sector websites that link them to the federal ACA market — all they need is a person’s name, date of birth, and state of residence — to enroll them or switch their coverage.

CMS has approved dozens of such “enhanced direct enrollment” websites run by private companies, which are designed to make it easier and faster for agents certified to offer insurance through healthcare.gov.

Rules went into effect last June requiring agents to get written or recorded consent from clients before enrolling them or changing their coverage, but brokers say they’re rarely asked to produce the documentation. If CMS makes changes to healthcare.gov — such as adding passcodes, as California has — it would need to require all alternative-enrollment partners to do the same.

The largest is San Francisco-based HealthSherpa, which assisted 52% of active enrollments nationally for this year, said CEO George Kalogeropoulos.

The company has a 10-person fraud investigation team, he said, which has seen “a significant spike in concerns about unauthorized switching.” They report problems to state insurance departments, insurance carriers, and federal regulators “and refer consumers to advocates on our team to make sure their plans are corrected.”

Solutions must be “targeted,” he said. “The issue with some of the solutions proposed is it negatively impacts the ability of all consumers to get enrolled.”

Most people who sign up for ACA plans are aided by agents or platforms like HealthSherpa, rather than doing it themselves or seeking help from nonprofit organizations. Brokers don’t charge consumers; instead, they receive commissions from insurers participating in state and federal marketplaces for each person they enroll in a plan.

While California officials say their additional layers of authentication have not noticeably affected enrollment numbers, the state’s recent enrollment growth has been slower than in states served by healthcare.gov.

Still, Covered California’s Kingston pointed to a decreased number of uninsured people in the state. In 2014, when much of the ACA was implemented, 12.5% of Californians were uninsured, falling to 6.5% in 2022, according to data compiled by KFF. That year, the share of people uninsured nationwide was 8%.

Corlette said insurers have a role to play, as do states and CMS.

“Are there algorithms that can say, ‘This is a broker with outlier behavior’?” Insurance companies could then withhold commissions “until they can figure it out,” she said.

Kelley Schultz, vice president of commercial policy at AHIP, the trade association for large insurance companies, said sharing more information from the government marketplace about which policies are being switched could help insurers spot patterns.

CMS could also set limits on plan switches, as there is generally no legitimate need for multiple changes in a given month, Schultz said.

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Los titulares explotaron después que el Departamento de Agricultura confirmara que el virus de la gripe aviar H5N1 ha infectado a vacas lecheras en todo el país.

Las pruebas han detectado el virus en el ganado en nueve estados, principalmente en Texas y Nuevo México, y más recientemente en Colorado, dijo Nirav Shah, director principal adjunto de los Centros para el Control y Prevención de Enfermedades (CDC), en un evento del 1 de mayo.

Otros animales, y al menos una persona en Texas, también se infectaron con el H5N1. Pero lo que más temen los científicos es si el virus se propagara de manera eficiente de persona a persona. Eso no ha sucedido y podría no suceder. Shah dijo que los CDC consideran que el brote de H5N1 “es un riesgo bajo para el público en general en este momento”.

Los virus evolucionan y los brotes pueden cambiar rápidamente. “Como con cualquier brote importante, esto se mueve a la velocidad de un tren bala”, dijo Shah. “De lo que hablamos ahora es de un instantánea de ese tren que se mueve rápidamente”. Lo que quiere decir es que lo que hoy se sabe sobre la gripe aviar H5N1 seguramente cambiará.

Con eso en mente, KFF Health News explica lo que se necesita saber ahora.

¿Quién contrae el virus que causa la gripe aviar?

Principalmente las aves. Sin embargo, en los últimos años, el virus de la gripe aviar H5N1 ha estado saltando cada vez más de las aves a los mamíferos en todo el mundo. La creciente lista, de más de 50 especies, incluye focas, cabras, zorrinos, gatos y perros salvajes en un zoológico en el Reino Unido. Al menos 24,000 leones marinos murieron en brotes de gripe aviar H5N1 en Sudamérica el año pasado.

Lo que hace que el brote actual en el ganado sea inusual es que se está propagando rápidamente de vaca a vaca, mientras que los otros casos, excepto las infecciones de leones marinos, parecen limitados. Los investigadores saben esto porque las secuencias genéticas de los virus H5N1 extraídos de las vacas este año eran casi idénticas entre sí.

El brote de ganado también preocupa porque agarró al país desprevenido. Los investigadores que examinan los genomas del virus sugieren que originalmente se transmitió de las aves a las vacas a finales del año pasado en Texas, y desde entonces se ha propagado entre muchas más vacas de las que se han examinado.

“Nuestros análisis muestran que esto ha estado circulando en vacas durante unos cuatro meses, bajo nuestras narices”, dijo Michael Worobey, biólogo especializado en evolución de la Universidad de Arizona en Tucson.

¿Es este el comienzo de la próxima pandemia?

Aún no. Pero es algo que vale la pena considerar porque una pandemia de gripe aviar sería una pesadilla. Más de la mitad de las personas infectadas por cepas anteriores del virus de la gripe aviar H5N1 de 2003 a 2016 murieron.

Incluso si las tasas de mortalidad resultan ser menos severas para la cepa H5N1 que circula actualmente en el ganado, las repercusiones podrían implicar muchas personas enfermas y hospitales demasiado abrumados para manejar otras emergencias médicas.

Aunque al menos una persona se infectó con el H5N1 este año, el virus no puede provocar una pandemia en su estado actual.

Para alcanzar este horrible estatus, un patógeno necesita enfermar a muchas personas en varios continentes. Y para lograrlo, el virus H5N1 necesitaría infectar a toneladas de personas. Eso no sucederá a través de saltos ocasionales del virus de los animales de granja a las personas. Más bien, el virus debe adquirir mutaciones para propagarse de persona a persona, como la gripe estacional, como una infección respiratoria transmitida principalmente por el aire cuando las personas tosen, estornudan y respiran.

Como aprendimos de covid-19, los virus transmitidos por el aire son difíciles de frenar.

Eso aún no ha sucedido. Sin embargo, los virus H5N1 ahora tienen muchas oportunidades para evolucionar a medida que se replican dentro de los organismos de miles de vacas. Como todos los virus, mutan a medida que se replican, y las mutaciones que mejoran la supervivencia del virus se transmiten a la próxima generación. Y debido a que las vacas son mamíferos, los virus podrían estar mejorando en reproducirse dentro de células más cercanas a las nuestras que las de las aves.

La evolución de un virus de gripe aviar listo para una pandemia podría facilitarse por una especie de superpoder que poseen muchos virus. Es decir, a veces intercambian sus genes con otras cepas en un proceso llamado recombinación.

En un estudio publicado en 2009, Worobey y otros investigadores rastrearon el origen de la pandemia del virus de la gripe porcina H1N1 en eventos en los que diferentes virus que causaban esta gripe, la gripe aviar y la gripe humana mezclaban y combinaban sus genes dentro de cerdos que se estaban infectando simultáneamente. Los cerdos no necesitan estar involucrados esta vez, advirtió Worobey.

¿Comenzará una pandemia si una persona bebe leche contaminada con el virus?

Aún no. La leche de vaca, así como la leche en polvo y la fórmula infantil, que se venden en tiendas se consideran seguras porque la ley requiere que toda la leche vendida comercialmente sea pasteurizada. Este proceso de calentar la leche a altas temperaturas mata bacterias, virus y otros microorganismos.

Las pruebas han identificado fragmentos de virus H5N1 en la leche comercial, pero confirman que los fragmentos del virus están muertos y, por lo tanto, son inofensivos.

Sin embargo, la leche “cruda” no pasteurizada ha demostrado contener virus H5N1 vivos, por eso la Administración de Drogas y Alimentos (FDA) y otras autoridades sanitarias recomiendan firmemente a las personas que no la tomen, porque podrían enfermarse de gravedad o algo peor.

Pero, aún así, es poco probable que se desate una pandemia porque el virus, en su forma actual, no se propaga eficientemente de persona a persona, como lo hace, por ejemplo, la gripe estacional.

¿Qué se debe hacer?

¡Mucho! Debido a la falta de vigilancia, el Departamento de Agricultura (USDA) y otras agencias han permitido que la gripe aviar H5N1 se propague en el ganado, sin ser detectada. Para hacerse cargo de la situación, el USDA recientemente ordenó que se sometan a pruebas a todas las vacas lecheras en lactancia antes que los ganaderos las trasladen a otros estados, y que se informen los resultados de las pruebas.

Pero al igual que restringir las pruebas de covid a los viajeros internacionales a principios de 2020 permitió que el coronavirus se propagara sin ser detectado, testear solo a las vacas que se mueven entre estados dejaría pasar muchos casos.

Estas pruebas limitadas no revelarán cómo se está propagando el virus entre el ganado, información que los ganaderos necesitan desesperadamente para frenarlo. Una hipótesis principal es que los virus se están transfiriendo de una vaca a la siguiente a través de las máquinas utilizadas para ordeñarlas.

Para aumentar las pruebas, Fred Gingrich, director ejecutivo de la American Association of Bovine Practitioners, dijo que el gobierno debería ofrecer fondos a los ganaderos para que informen casos y así tengan un incentivo para hacer pruebas. De lo contrario, dijo, informar solo daña la reputación por encima de las pérdidas financieras.

“Estos brotes tienen un impacto económico significativo”, dijo Gingrich. “Los ganaderos pierden aproximadamente el 20% de su producción de leche en un brote porque los animales dejan de comer, producen menos leche, y parte de esa leche es anormal y no se puede vender”.

Gingrich agregó que el gobierno ha hecho gratuitas las pruebas de H5N1 para los ganaderos, pero no han presupuestado dinero para los veterinarios que deben tomar muestras de las vacas, transportar las muestras y presentar los documentos. “Las pruebas son la parte menos costosa”, explicó.

Si las pruebas en las granjas siguen siendo esquivas, los virólogos aún pueden aprender mucho analizando secuencias genómicas del virus H5N1 de muestras de ganado. Las diferencias entre las secuencias cuentan una historia sobre dónde y cuándo comenzó el brote actual, el camino que recorre y si los virus están adquiriendo mutaciones que representan una amenaza para las personas.

Sin embargo, esta investigación vital se ha visto obstaculizada porque el USDA publica los datos incompletos y con cuentagotas, dijo Worobey.

El gobierno también debería ayudar a los criadores de aves de corral a prevenir brotes de H5N1, ya que estos matan a muchas aves y representan una amenaza constante de potenciales saltos de especies, dijo Maurice Pitesky, especialista en enfermedades de aves de la Universidad de California-Davis.

Las aves acuáticas como los patos y los gansos son las fuentes habituales de brotes en granjas avícolas, y los investigadores pueden detectar su proximidad mediante el uso de sensores remotos y otras tecnologías. Eso puede significar una vigilancia rutinaria para detectar signos tempranos de infecciones en aves de corral, usar cañones de agua para ahuyentar a las bandadas migratorias, reubicar animales de granja o llevarlos temporalmente a cobertizos. “Deberíamos estar invirtiendo en prevención”, dijo Pitesky.

Bien, no es una pandemia, pero ¿qué podría pasarle a las personas que contraigan la gripe aviar H5N1 de este año?

Realmente nadie lo sabe. Solo una persona en Texas fue diagnosticada con la enfermedad este año, en abril. Esta persona trabajaba con vacas lecheras, y tuvo un caso leve con una infección en el ojo. Los CDC se enteraron de esto debido a su proceso de vigilancia. Las clínicas deben alertar a los departamentos de salud estatales cuando diagnostican a trabajadores agrícolas con gripe, utilizando pruebas que detectan virus de la influenza en general.

Los departamentos de salud estatales luego confirman la prueba y, si es positiva, envían una muestra de la persona a un laboratorio de los CDC, donde se verifica específicamente la presencia del virus H5N1. “Hasta ahora hemos recibido 23”, dijo Shah. “Todos menos uno resultaron negativos”.

Agregó que funcionarios del departamento de salud estatal también están monitoreando a alrededor de 150 personas que han pasado tiempo alrededor de ganado. Están en contacto con estos trabajadores agrícolas con llamadas telefónicas, mensajes de texto o visitas en persona para ver si desarrollan síntomas. Y si eso sucede, les harán pruebas.

Otra forma de evaluar a los trabajadores agrícolas sería testear su sangre en busca de anticuerpos contra el virus de la gripe aviar H5N1; un resultado positivo indicaría que podrían haberse infectado sin saberlo. Pero Shah dijo que los funcionarios de salud aún no están haciendo este trabajo.

“El hecho de que hayan pasado cuatro meses y aún no hayamos hecho esto no es una buena señal”, dijo Worobey. “No estoy muy preocupado por una pandemia en este momento, pero deberíamos comenzar a actuar como si no quisiéramos que sucediera”.

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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SACRAMENTO, California – Las familias de personas con discapacidades intelectuales y del desarrollo dicen que el gobernador Gavin Newsom no está cumpliendo con un aumento programado para los trabajadores que cuidan de sus seres queridos.

Sus defensores advierten sobre posibles demandas contra el estado si los servicios para estas personas se vuelven más difíciles de conseguir.

El gobernador demócrata apela al déficit presupuestario del estado para postergar por un año los aumentos salariales de unos 150,000 trabajadores que cuidan a personas con alguna discapacidad. De este modo, ahorrará aproximadamente $613 millones en fondos estatales.

Pero esta medida significa, a la vez, que el estado dejará de percibir aproximadamente $408 millones adicionales que provienen de reembolsos de Medicaid. Esto supondrá una reducción del financiamiento de más de $1,000 millones.

Algunos legisladores afirman que no cumplir con el aumento prometido disparará la rotación de los trabajadores y así quedarán más puestos vacantes, lo que dejará a miles de niños y adultos con discapacidades sin servicios críticos tanto en su hogar como en centros residenciales.

Los defensores de las personas con discapacidad advierten que esta medida podría violar el Acta Lanterman, una ley emblemática de California que establece que el estado debe proporcionar servicios y recursos a las personas con discapacidad y a sus familias.

Felisa Strickland, una mujer de 60 años que vive en Santa Bárbara, lleva más de un año buscando un programa diurno para su hija Lily, de 23 años, quien tiene autismo y parálisis cerebral. “Newsom está rompiendo una promesa y esta situación está generando muchos problemas de salud física y mental para las personas. También representa una carga de estrés innecesaria para quienes, como yo, somo padres mayores que cuidamos de nuestros hijos”.

Los trabajadores que cuidan a personas que viven con discapacidad, también llamados profesionales de apoyo directo, atienden diariamente a niños y adultos con discapacidades intelectuales y del desarrollo, como autismo, parálisis cerebral y epilepsia. Sus cuidados los ayudan a mantenerse independientes y facilitan que se integren mejor a sus comunidades.

En California, más de 400,000 personas que viven con discapacidad necesitan asistencia. Esa franja de la población va en aumento, del mismo modo que ocurre con los adultos mayores. No está claro cuál es la dimensión de la escasez de cuidadores porque el estado no ha publicado datos sobre la fuerza laboral. Como en general la demanda de estos trabajadores crece, algunos expertos predicen que hacia 2030 faltarán entre 600,000 y 3,2 millones de profesionales de apoyo directo.

Los defensores explican que California paga a la mayoría de los proveedores entre $16 y $ 20 por hora, lo que se ajusta al salario mínimo del estado pero no llega a lo que algunos economistas consideran una remuneración digna.

En 2021, el estado se había comprometido a aumentar los salarios. Lo hizo después de detectar una brecha de $1,800 millones entre las tarifas que cobraban las organizaciones sin fines de lucro contratadas para ofrecer cuidados y los aranceles que se consideraban adecuados.

Hasta ahora, California ha aportado alrededor de la mitad del total de esa suma, la mayor parte de la cual se destinó a aumentar los salarios y las prestaciones. Los trabajadores esperaban otro aumento salarial en julio, de entre $2 y $4 la hora, pero Newsom propuso que fuera postergado.

Además, las organizaciones sin fines de lucro señalan que California ha vuelto más difícil retener a los trabajadores en tareas de cuidado después que aumentara los salarios en otros sectores vinculados a los servicios y la salud.

Newsom aprobó un salario mínimo de $20 para los empleados de restaurantes de comida rápida, que entró en vigencia en abril. Además, el año anterior había llegado a un acuerdo con los sindicatos y los hospitales para que los salarios de los trabajadores de salud subieran a un mínimo de $25 por hora.

Ricardo Zegri asegura que la cadena de restaurantes de comida rápida Taco Bell le pagaría más que los $19 por hora que gana como supervisor de trabajadores de cuidado para personas con alguna discapacidad.

“Cada vez que cobro el sueldo, tenemos una discusión en casa sobre el pago de cuáles facturas necesitamos priorizar y si es hora de que empiece a buscar un empleo donde me paguen más”, dijo Zegri, que tiene un segundo trabajo como músico en el área de la Bahía de San Francisco.

Newsom quiere preservar iniciativas de salud clave, incluida la expansión estatal de Medi-Cal a inmigrantes de bajos ingresos independientemente de su estatus legal, y CalAIM, un ambicioso experimento de $12,000 millones para transformar Medi-Cal en una aseguradora de salud y un proveedor de servicios sociales.

Sin embargo, el retraso en las tarifas para brindar atención a personas con discapacidades es el mayor ahorro en el presupuesto de Salud y Servicios Humanos, ya que Newsom y los líderes legislativos buscan recortes, demoras y cambios en la financiación para cerrar un déficit estimado de entre $38,000 millones y $73,000 millones.

Decenas de legisladores de ambos partidos están pidiendo a Newsom y a los líderes legislativos que mantengan el aumento prometido. Stephanie Nguyen, integrante de la Asamblea y demócrata de Elk Grove, firmó una carta de respaldo a ese reclamo.

Aunque los legisladores están negociando con la administración, dijeron que es muy poco probable que se revierta la decisión de dejar para más adelante el aumento de sueldo. “Todo el mundo tiene que perder algo”, dijo Nguyen.

Krystyne McComb, vocera del Departamento de Servicios de Desarrollo, admitió que este año, con la postergación del aumento, California perdería fondos federales. Pero aseguró que los volverá a recuperar cuando restablezca el plan, en 2025.

El departamento no respondió a las preguntas sobre cómo piensa retener a los trabajadores ni cómo se cubrirían los puestos vacantes.

El sistema de servicios de discapacidad puede colapsar a partir de la postergación del aumento salarial que propone el gobernador Newsom, afirma Jordan Lindsey, director ejecutivo de Arc of California, una organización de defensa de los derechos de las personas con discapacidad que opera en todo el estado.

Las familias dicen que California ya no cumple con los servicios que necesitan. Strickland dejó su trabajo para cuidar de su hija Lily pero asegura que “no es razonable esperar que alguien cuide de otra persona 24 horas al día, siete días a la semana”.

Lily se graduó de la escuela secundaria y en 2022 terminó un programa que prepara a jóvenes con discapacidades para la transición a la vida adulta. Estaba deseando apuntarse a un programa diurno para hacer nuevos amigos, pero aún no ha encontrado vacante.

Debido a la escasez de trabajadores, Lilly sólo recibe los cuidados de un profesional de apoyo directo en su casa durante cuatro horas a la semana. Le paga unos $16 la hora.

El tiempo en que Lily está con el cuidador, su comportamiento cambia y vuelve a ser la persona feliz que era antes, explica Strickland.

“El sistema ya está en crisis”, afirma. “Hay montones y montones de personas que pasan el día sentadas en su casa porque no tienen a dónde ir”.

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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Since becoming a father a few months ago, I’ve been nursing a grudge against something tiny, seemingly inconsequential, and often discarded: instructional manuals. Parenthood requires a lot of gadgetry to maintain a kid’s health and welfare. Those gadgets require puzzling over booklets, decoding inscrutable pictographs, and wondering whether warnings can be safely ignored or are actually disclosing a hazard.

To give an example, my daughter, typically a cooing little marsupial, quickly discovered babyhood’s superpower: Infants emerge from the womb with talon-strength fingernails. She wasn’t afraid to use them, against either her parents or herself. So we purchased a pistachio-green, hand-held mani-pedi device.

That was the easy part. The difficulty came when we consulted the manual, a palm-sized, two-page document.

The wandlike tool is topped with a whirring disc. One can apparently adjust the speed of its rotation using a sliding toggle on the wand. But the product manual offered confusing advice: “Please do not use round center position grinding,” it said. Instead, “Please use the outer circle position to grinding.” It also proclaimed, “Stay away from children.” In finer print, the manual revealed the potential combination of kids and the device’s smaller parts was the reason for concern.

One would hope for more clarity about a doodad that could inadvertently cause pain.

Later, I noticed another warning: “If you do not use this product for a long time, please remove the battery.” Was it dangerous? Or simply an unclear and unhelpful yet innocuous heads-up? We didn’t know what to do with this information.

We now notice shoddy instructions everywhere.

One baby carrier insert told us to use the product for infants with “adequate” head, neck, and torso control — a vague phrase. (The manufacturer declined to comment.)

Another manual, this one online and for a car seat — a device that’s supposed to protect your kid — informed readers with words and images that a model baby was “properly positioned” relative to the top of the headrest “structure” when more than one inch from the top. Just pixels away, the same model, slumped further down, was deemed improperly positioned: “The headrest should not be more than 1” from the top of her head,” it said, in tension with its earlier instructions. Which was it, more than one inch or not? So we fiddle and hope for the best.

I acknowledge this sounds like new-parent paranoia. But we’re not entirely crazy: Manuals are important, and ones for baby products “are notoriously difficult to write,” Paul Ballard, the managing director of 3di Information Solutions, a technical writing firm, told me.

Deborah Girasek, a professor of social and behavior sciences at the Uniformed Services University of the Health Sciences, told me that for decades, for the young and middle-aged alike, unintentional injury has been the leading cause of death. That’s drownings, fires, suffocation, car crashes. The USU is a federal service academy training medical students destined for the armed services or other parts of the government.

Some of these deaths are caused by lack of effective communication — that is, the failure of instruction about how to avoid injury.

And these problems stretch from cheap devices to the most sophisticated products of research and development.

It’s a shortcoming that’s prompted several regulatory agencies charged with keeping Americans healthy, including the Consumer Product Safety Commission, the Food and Drug Administration, and the National Highway Traffic Safety Administration, to prod companies into providing more helpful instructions.

By some lights, they’ve had success. NHTSA, for example, has employees who actually read manuals. The agency says about three-quarters of car seats’ manuals rate four or five stars out of five, up from 38% in 2008. Then again, our car seat’s has a five-star rating. But it turns out the agency doesn’t evaluate online material.

Medical product manuals sometimes don’t fare too well either. Raj Ratwani, director of MedStar Health’s Human Factors program, told me that, for a class he teaches to nurses and doctors, he prompted students to evaluate the instructions for covid-19 tests. The results were poor. One time, instructions detailed two swabs. The kit had only one.

Technical writers I spoke with identified this kind of mistake as a symptom of cost cutting. Maybe a company creates one manual meant to cover a range of products. Maybe it puts together the manual at the last moment. Maybe it farms out the task to marketers, who don’t necessarily think about how manuals need to evolve as the products do.

For some of these cost-cutting tactics, “the motivation for doing it can be cynical,” Ballard said.

Who knows.

Some corners of the technical writing world are gloomy. People worry their jobs aren’t secure, that they’re going to be replaced by someone overseas or artificial intelligence. Indeed, multiple people I spoke with said they’d heard about generative AI experiments in this area.

Even before AI has had its effect, the job market has weighed in. According to the federal government, the number of technical writers fell by a third from 2001, its recent peak, to 2023.

One solution for people like us — frustrated by inscrutable instructions — is to turn to another uncharted world: social media. YouTube, for instance, has helped us figure out a lot of the baby gadgets we have acquired. But those videos also are part of a wild West, where creators offer helpful tips on baby products then refer us to their other productions (read: ads) touting things like weight loss services. Everyone’s got to make a living, of course; but I’d rather they not make a buck off viewers’ postpartum anxiety.

It reminds me of an old insight that became a digital-age cliché: Information wants to be free. Everyone forgets the second half: Information also wants to be expensive. It’s cheap to share information once produced, but producing that information is costly — and a process that can’t easily or cheaply be replaced. Someone must pay. Instruction manuals are just another example.

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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Headlines are flying after the Department of Agriculture confirmed that the H5N1 bird flu virus has infected dairy cows around the country. Tests have detected the virus among cattle in nine states, mainly in Texas and New Mexico, and most recently in Colorado, said Nirav Shah, principal deputy director at the Centers for Disease Control and Prevention, at a May 1 event held by the Council on Foreign Relations.

A menagerie of other animals have been infected by H5N1, and at least one person in Texas. But what scientists fear most is if the virus were to spread efficiently from person to person. That hasn’t happened and might not. Shah said the CDC considers the H5N1 outbreak “a low risk to the general public at this time.”

Viruses evolve and outbreaks can shift quickly. “As with any major outbreak, this is moving at the speed of a bullet train,” Shah said. “What we’ll be talking about is a snapshot of that fast-moving train.” What he means is that what’s known about the H5N1 bird flu today will undoubtedly change.

With that in mind, KFF Health News explains what you need to know now.

Q: Who gets the bird flu?

Mainly birds. Over the past few years, however, the H5N1 bird flu virus has increasingly jumped from birds into mammals around the world. The growing list of more than 50 species includes seals, goats, skunks, cats, and wild bush dogs at a zoo in the United Kingdom. At least 24,000 sea lions died in outbreaks of H5N1 bird flu in South America last year.

What makes the current outbreak in cattle unusual is that it’s spreading rapidly from cow to cow, whereas the other cases — except for the sea lion infections — appear limited. Researchers know this because genetic sequences of the H5N1 viruses drawn from cattle this year were nearly identical to one another.

The cattle outbreak is also concerning because the country has been caught off guard. Researchers examining the virus’s genomes suggest it originally spilled over from birds into cows late last year in Texas, and has since spread among many more cows than have been tested. “Our analyses show this has been circulating in cows for four months or so, under our noses,” said Michael Worobey, an evolutionary biologist at the University of Arizona in Tucson.

Q: Is this the start of the next pandemic?

Not yet. But it’s a thought worth considering because a bird flu pandemic would be a nightmare. More than half of people infected by older strains of H5N1 bird flu viruses from 2003 to 2016 died. Even if death rates turn out to be less severe for the H5N1 strain currently circulating in cattle, repercussions could involve loads of sick people and hospitals too overwhelmed to handle other medical emergencies.

Although at least one person has been infected with H5N1 this year, the virus can’t lead to a pandemic in its current state. To achieve that horrible status, a pathogen needs to sicken many people on multiple continents. And to do that, the H5N1 virus would need to infect a ton of people. That won’t happen through occasional spillovers of the virus from farm animals into people. Rather, the virus must acquire mutations for it to spread from person to person, like the seasonal flu, as a respiratory infection transmitted largely through the air as people cough, sneeze, and breathe. As we learned in the depths of covid-19, airborne viruses are hard to stop.

That hasn’t happened yet. However, H5N1 viruses now have plenty of chances to evolve as they replicate within thousands of cows. Like all viruses, they mutate as they replicate, and mutations that improve the virus’s survival are passed to the next generation. And because cows are mammals, the viruses could be getting better at thriving within cells that are closer to ours than birds’.

The evolution of a pandemic-ready bird flu virus could be aided by a sort of superpower possessed by many viruses. Namely, they sometimes swap their genes with other strains in a process called reassortment. In a study published in 2009, Worobey and other researchers traced the origin of the H1N1 “swine flu” pandemic to events in which different viruses causing the swine flu, bird flu, and human flu mixed and matched their genes within pigs that they were simultaneously infecting. Pigs need not be involved this time around, Worobey warned.

Q: Will a pandemic start if a person drinks virus-contaminated milk?

Not yet. Cow’s milk, as well as powdered milk and infant formula, sold in stores is considered safe because the law requires all milk sold commercially to be pasteurized. That process of heating milk at high temperatures kills bacteria, viruses, and other teeny organisms. Tests have identified fragments of H5N1 viruses in milk from grocery stores but confirm that the virus bits are dead and, therefore, harmless.

Unpasteurized “raw” milk, however, has been shown to contain living H5N1 viruses, which is why the FDA and other health authorities strongly advise people not to drink it. Doing so could cause a person to become seriously ill or worse. But even then, a pandemic is unlikely to be sparked because the virus — in its current form — does not spread efficiently from person to person, as the seasonal flu does.

Q: What should be done?

A lot! Because of a lack of surveillance, the U.S. Department of Agriculture and other agencies have allowed the H5N1 bird flu to spread under the radar in cattle. To get a handle on the situation, the USDA recently ordered all lactating dairy cattle to be tested before farmers move them to other states, and the outcomes of the tests to be reported.

But just as restricting covid tests to international travelers in early 2020 allowed the coronavirus to spread undetected, testing only cows that move across state lines would miss plenty of cases.

Such limited testing won’t reveal how the virus is spreading among cattle — information desperately needed so farmers can stop it. A leading hypothesis is that viruses are being transferred from one cow to the next through the machines used to milk them.

To boost testing, Fred Gingrich, executive director of a nonprofit organization for farm veterinarians, the American Association of Bovine Practitioners, said the government should offer funds to cattle farmers who report cases so that they have an incentive to test. Barring that, he said, reporting just adds reputational damage atop financial loss.

“These outbreaks have a significant economic impact,” Gingrich said. “Farmers lose about 20% of their milk production in an outbreak because animals quit eating, produce less milk, and some of that milk is abnormal and then can’t be sold.”

The government has made the H5N1 tests free for farmers, Gingrich added, but they haven’t budgeted money for veterinarians who must sample the cows, transport samples, and file paperwork. “Tests are the least expensive part,” he said.

If testing on farms remains elusive, evolutionary virologists can still learn a lot by analyzing genomic sequences from H5N1 viruses sampled from cattle. The differences between sequences tell a story about where and when the current outbreak began, the path it travels, and whether the viruses are acquiring mutations that pose a threat to people. Yet this vital research has been hampered by the USDA’s slow and incomplete posting of genetic data, Worobey said.

The government should also help poultry farmers prevent H5N1 outbreaks since those kill many birds and pose a constant threat of spillover, said Maurice Pitesky, an avian disease specialist at the University of California-Davis.

Waterfowl like ducks and geese are the usual sources of outbreaks on poultry farms, and researchers can detect their proximity using remote sensing and other technologies. By zeroing in on zones of potential spillover, farmers can target their attention. That can mean routine surveillance to detect early signs of infections in poultry, using water cannons to shoo away migrating flocks, relocating farm animals, or temporarily ushering them into barns. “We should be spending on prevention,” Pitesky said.

Q: OK it’s not a pandemic, but what could happen to people who get this year’s H5N1 bird flu?

No one really knows. Only one person in Texas has been diagnosed with the disease this year, in April. This person worked closely with dairy cows, and had a mild case with an eye infection. The CDC found out about them because of its surveillance process. Clinics are supposed to alert state health departments when they diagnose farmworkers with the flu, using tests that detect influenza viruses, broadly. State health departments then confirm the test, and if it’s positive, they send a person’s sample to a CDC laboratory, where it is checked for the H5N1 virus, specifically. “Thus far we have received 23,” Shah said. “All but one of those was negative.”

State health department officials are also monitoring around 150 people, he said, who have spent time around cattle. They’re checking in with these farmworkers via phone calls, text messages, or in-person visits to see if they develop symptoms. And if that happens, they’ll be tested.

Another way to assess farmworkers would be to check their blood for antibodies against the H5N1 bird flu virus; a positive result would indicate they might have been unknowingly infected. But Shah said health officials are not yet doing this work.

“The fact that we’re four months in and haven’t done this isn’t a good sign,” Worobey said. “I’m not super worried about a pandemic at the moment, but we should start acting like we don’t want it to happen.”

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SACRAMENTO, Calif. — Families of people with intellectual and developmental disabilities say Gov. Gavin Newsom is reneging on a scheduled raise for the workers who care for their loved ones, and advocates warn of potential lawsuits if disability services become harder to get.

Citing California’s budget deficit, the Democratic governor wants to save around $613 million in state funds by delaying pay increases for a year for about 150,000 disability care workers. The state will forgo an additional $408 million in Medicaid reimbursements, reducing funding by over $1 billion.

Some lawmakers say this decision will increase staff turnover and vacancies, leaving thousands of children and adults with disabilities without critical services at home and in residential facilities. Disability advocates warn it could violate the Lanterman Act, California’s landmark law that says the state must provide services and resources to people with disabilities and their families.

Newsom is “breaking a promise,” said Felisa Strickland, 60, who has been searching for more than a year for a day program for her 23-year-old daughter, Lily, who has autism and cerebral palsy. “It’s creating a lot of physical and mental health problems for people, and it’s a lot of undue stress on aging parent caregivers like myself.”

Disability care workers, known as direct support professionals, provide daily, hands-on caregiving to help children and adults with intellectual and developmental disabilities, such as autism, cerebral palsy, and epilepsy, remain independent and integrated into their communities.

In California, more than 400,000 people with disabilities need accommodation, and this population, along with seniors, is increasing. It’s not clear how big the worker shortage is because the state hasn’t released workforce data. As the demand for these workers grows generally, experts predict a shortage of between 600,000 and 3.2 million direct care workers by 2030.

Advocates say California pays most providers from $16 to $20 an hour, which meets the state’s minimum wage but falls short of what some economists consider a living wage. In 2021, the state committed to raising wages after identifying a $1.8 billion gap between the rates received by nonprofits that contract with the state to provide care and the rates deemed adequate.

Thus far, the state has provided around half that total, most of which has gone to raising wages and benefits. Workers had been expecting one more increase, of $2-$4 an hour, in July, until Newsom proposed a delay.

Also, nonprofits say California has made it harder to compete for workers after raising wages in other service and health industries. Newsom approved a $20 minimum wage for fast-food workers that went into effect in April and he struck a deal last year with unions and hospitals to begin raising health care workers’ wages to a minimum of $25 an hour.

Ricardo Zegri said Taco Bell would pay him more than the $19 an hour he makes as a disability care worker in a supervisory position.

“Every paycheck, it’s a discussion at home about what bills we need to prioritize and whether it’s time to start looking for work that pays more,” said Zegri, who works a second job as a musician in the San Francisco Bay Area.

Newsom wants to preserve key health initiatives, including the state expansion of Medi-Cal to low-income immigrants regardless of legal status, and CalAIM, an ambitious $12 billion experiment to transform Medi-Cal into both a health insurer and a social services provider. However, the rate delay for providing disability care is the largest savings in the Health and Human Services budget as Newsom and legislative leaders look to cuts, delays, and shifts in funding to close a deficit estimated between $38 billion and $73 billion.

Dozens of legislators from both parties are asking Newsom and legislative leaders to preserve the increase. Assembly member Stephanie Nguyen, a Democrat from Elk Grove, signed a letter supporting the raise. Although lawmakers are negotiating with the administration, she said reversing the decision to delay the pay boost is unlikely. Everybody “has to take a hit somewhere,” Nguyen said.

Krystyne McComb, a spokesperson for the Department of Developmental Services, said even though the state would lose federal matching funds this year, it would resume drawing funds when the state reinstates the plan in 2025.

The department did not respond to questions about how it plans to retain workers and fill vacancies.

Newsom’s proposal risks a collapse of the disability service system, which would violate the Lanterman Act and make the state vulnerable to lawsuits, said Jordan Lindsey, executive director of the Arc of California, a statewide disability rights advocacy organization.

Families say the state has already fallen short on services they need. Strickland quit her job to care for Lily, the Santa Barbara mother said. “It’s not reasonable to expect someone to care for somebody else 24 hours a day, seven days a week,” she said.

Lily graduated from high school and in 2022 completed a program that prepares youth with disabilities to transition into adult life. She had been looking forward to joining a day program to make new friends but has yet to find a spot. And due to a shortage of workers, Lily receives only four hours a week at home with a provider, who is paid around $16 an hour.

When Lily hangs out with the provider, her demeanor changes to the happy person she used to be, Strickland said.

“The system is already in crisis,” she said. “There are tons and tons of people that are sitting at home because there’s nowhere for them to go.”

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When Change Healthcare, a subsidiary of UnitedHealth Group, got hit by a cyberattack this winter, a big chunk of the nation’s doctors, pharmacists, hospitals, and therapists stopped getting paid. The hack also limited health providers’ ability to share medical records and other information critical to patient care.

The cyberattack revealed an often overlooked part of how health care is paid for in the United States and raised concerns for antitrust advocates about how large UnitedHealth has grown.

Host Dan Weissmann speaks with reporters Brittany Trang of Stat News and Maureen Tkacik of The American Prospect about their reporting on the hack and what it says about antitrust enforcement of health care companies.

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

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

Dan: Hey there. 

Brittany Trang is a reporter at STAT News– that’s a health care news outlet. We talked with Brittany’s colleague Bob Herman in our last episode. Like Bob, she’s been covering the business of health care. 

And for Brittany, this story starts with Bob flagging a story to their team. He… 

Brittany Trang: Dropped a link in the chat that said like, hey guys, I think we should write about this, question mark, and nobody replied, 

Dan: The story was about a cyber-attack against a company called Change Healthcare. 

Brittany Trang: I was like that sounds like a startup and I was like who cares about some sort of health tech startup 

Dan: But Bob kept bringing it up. 

Brittany Trang: And I finally clicked on the link, and I was like, oh no, this is a big deal. This touches most of the American healthcare system. 

Dan: Yeah, and it’s no joke. Change Healthcare is what’s called a data clearinghouse. And it’s a big one. It’s an important part of health care’s financial plumbing. Someone had gone in and basically hijacked their computer system and said, Unless we get $22 million dollars, we’re not giving it back. So Change went offline, and a huge chunk of the country’s Pharmacists, doctors, therapists, hospitals just stopped getting paid. And Change Healthcare stayed offline for weeks and weeks. As we record this, seven weeks in, big parts of it remain offline. And here’s this other thing: Change Healthcare is not a startup. It’s been around for like 20 years. And in late 2022, Change got purchased by another company– a company that’s starting to become a real recurring character on this show: UnitedHealth Group.

You may remember: They’re the country’s biggest insurance company AND they’ve got their hands in just about every other part of health care, in a big way. For instance, they’re the very biggest employer of physicians in the country, by a huge margin. They’ve got their own bank, which– among other things– offers payday loans to doctors. And they have a huge collection of companies that do back-end services. In our last episode we heard about Navi Health— and how, under United’s ownership, insurance companies have been using NaviHealth’s algorithm to cut off care for people in nursing homes. [Boy, yeah– that was a fun story…] And as we’ve been learning: When one company like this gets so big, their problems– like this cyber-attack– become everybody’s problem. And in this case, everybody’s problem seems to create an opportunity for United. We’ll break down how THAT could possibly work, but obviously it doesn’t seem like the way a lot of us would WANT things to work.. And we’ll end up talking about what we can maybe do about it. Not “we” as in a bunch of individuals trying to tackle an opponent this big. Good luck with that. But “we” as in the “We the people” of the United States Constitution. We may already be on the case. 

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

We’ll start with an attempt to answer what you’d think would be a simple question: What does Change Healthcare do?

Here’s Brittany Trang from STAT News again. 

Brittany Trang: It’s kind of like Visa or Mastercard or something. Like, when you go to the grocery store and you pay with a credit card, you are not putting your money directly into the pockets of the grocery store. There’s a middleman in there and change is that middleman, but for a ton of different things.

Dan: Like insurance claims. Brittany says hospitals and doctors offices often don’t submit claims directly to insurance companies. They send the claim to a middleman like Change. And then Change figures out where that claim needs to go next. Like: I’m sending a bunch of mail– I put it all in one mailbox, and the post office figures out how to get it where it goes. Except of course, there’s no paper here, no envelopes, no physical packages: All those claims are basically data. Which is why a company like Change is called a data clearinghouse. And even if a given provider uses some other clearinghouse– and of course there are others– Change may still be involved. Because INSURANCE companies like Aetna also use Change as a place to COLLECT claims from providers. On that side, Change is kind of like a post-office box. But claims are just one of the types of data that Change handles. For instance… 

Brittany Trang: when you went to the pharmacy counter or when you would check in at the doctor’s office and they take your insurance information and figure out like what you’re going to pay for this visit. Both of those processes were messed up. 

Dan: Yeah, and there’s more! Prior authorizations– like when your doctor checks in advance to make sure your insurance company is OK with paying for whatever. Those all go through companies like Change. So, if change is offline, do they do your MRI, or your surgery– and just hope it doesn’t get denied when Change comes back? And once claims get approved, data for payments goes through Change too. So payments– a lot of payments– just stopped going out. Here’s Brittany Trang. 

Brittany Trang: it’s just kind of flabbergasting how big this is. This collapsed most of healthcare in some way or another. 

Dan: Overall, the numbers are wild: Change reportedly processes 1.5 trillion dollars a year in claims. Maybe a third of everything that happens in healthcare. According to the American Hospital Association, 94 percent of hospitals said they were affected. Some more than others. Not all providers use Change as their primary clearinghouse. But lots do. And for them, everything just stopped. 

Brittany Trang: I talked to one provider she’s like, Oh, I can, I can talk. I’m, here today and tomorrow before we close. And I was like, before we close for spring break. And she said, no, we have 3 and 13 cents left in our bank account. Brittany says that provider got a last minute reprieve– an emergency loan from United. There have been two or three rounds of these loans so far, plus some advance payments from Medicare. But as the outage has dragged on– it started in February, and we’re recording this seven weeks later– it’s hard to know if those are going to be enough. At the end of March, I talked with Emily Benson. She runs a therapy practice in a Minneapolis suburb. Eight clinicians, mostly treating kids. She says the practice does maybe 70 or 80 thousand dollars worth of business a month. But then in February… Emily Benson: essentially everything went dark for us. 

Dan: United publicly acknowledged the Change hack on February 21st. But Emily Benson says she didn’t actually get a heads-up until almost a week later. 

Emily Benson: a lot of alarm bells went off, that was the end of the month. And so a lot of payments came due 

Dan: Her rent. Paychecks for her colleagues, and herself. 

Emily Benson: I mean, I was in a panic. Y’know, I didn’t know where I was going to go. 

Dan: She says she usually gets two payments a week from insurance, with everything passing through Change. But it’s not just the payments from insurance. Change also provides the documents that say how much an insurance company is GOING to pay for any given claim. 

Emily Benson: That’s a critical document because that tells me what does the family owe us. And then the beneficiary is also going to get that information. So they’re not surprised by what we charge them. So now every week we’re stacking up and stacking up these amounts that the family’s going to owe us. 

Dan: By the time we talked, Emily Benson had gotten two loans from United. About 40,000 each: maybe a month’s worth of billing for her, between the two loans. 

Emily Benson: That first one was wiped out. Pretty quickly because now we’re on week five I’m working on the second, um, installment that I got from united. But, you know, that’s half gone now too. So I don’t know what the next step is. We’re nowhere near. Getting claims processing yet and so. I’m kind of panicking Yeah. 

Emily Benson: it looks like the terms are within 45 days. You have to pay back that temporary loan. How am I going to do that if I don’t have claims coming? 

Dan: God. 

Emily Benson: I’m still panicking. 

Dan: I’ll bet. Oh my God. You’re very, you’re very calm for somebody in this situation. 

Emily Benson: Well, you know, I’ve had a lot of therapy of my own. That’s how you become a therapist. So panicking doesn’t help anyone. 

Dan: I guess that’s, I’ll take that under advisement. 

Dan: So, to pay back those loans– which are supposed to be repaid within 45 days– Emily Benson is gonna have to start getting paid again. As we spoke, she’d had been living without systems for filing claims and getting paid for five weeks. And even when those systems get moving again, she’s not gonna see all that money right away.

Emily Benson: Imagine the backlog and the clog. Five weeks worth of insurance claims I mean, we’re looking at a major traffic jam.

Dan: Oh myGod.Andif everybody were to work double time for the next five weeks, then it would be 10 weeks. But people can’t really work double time. 

Emily Benson: When you say that out loud, 

Dan: Sorry. 

Emily Benson: I don’t feel as grounded, 

Dan: I’m so sorry. 

Emily Benson: but, but, but it’s probably realistic. 

Dan: Other news outlets are talking to providers like Emily Benson all over the country. We’re recording this in mid-April. United hasn’t responded to our questions on this story, but their website says “We’re determined to make this right.” It says they’ve put out 4 point 7 billion dollars in emergency loans to providers so far. And it says that for the vast majority of Change Healthcare’s services, a restoration date is “still pending.” We have no idea what’s going to happen. What it’ll mean for our doctors, our therapists, our local hospitals. And look, there are elements of this story that go beyond health care. How many of us have personal health information– maybe financial information– that got seized by who the heck knows who in this? And yes, United’s getting some heat. They got a list of pointed questions from U.S. Representative Jamie Raskin. Their CEO is supposed to testify in a Senate hearing at the end of April. But as we’ll get into in a minute, this disaster– United’s disaster– could turn out to have a silver lining– for United: An opportunity to keep on growing. And that opportunity arises precisely because they’re so big, and doing so much business in so many parts of the medical-industrial complex. Which doesn’t sound great. It raises questions about the, uh, potential downsides for a lot of people, when individual companies get this freaking big. And it raises questions about what we can maybe do about it. And the answer is: Maybe more than we think. That’s all coming right up. 

This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering health care in America. Their reporters do amazing work, and we’re honored to be in cahoots with them. So, as we’ve seen, a company like United is so big that their problems become everybody’s problem. And at least in one case that I’ve seen so far, everybody’s problem can become United’s opportunity. That’s what happened in Oregon, and a reporter from Washington, DC, was in a position to make it a national story. 

Maureen Tkacik: My name is Maureen Tkacik, but you can call me Mo and I am the Investigations Editor at the American Prospect, and a Senior Fellow at the American Economic Liberties Project. 

Dan: The Prospect is a politically-progressive news magazine, and the Economic Liberties Project is a non-profit that pushes an anti-monopoly agenda. A lot of Mo’s reporting looks at how financial behemoths are looking like monopolists– especially in health care. So… 

Maureen Tkacik: have come to know United Healthcare, pretty well, over past, year or so, 

Dan: Looking at, for instance, how they gobble up medical practices. And as we mentioned, that kind of gobbling has made United the biggest employer of physicians in the country– by huge margins– in just the last few years. About one doc in ten now works for them, as employees or “affiliates.” As we’ve reported before, big players– like United, like big hospital systems, and like private equity groups– have been gobbling up medical practices for years. And: that kind of consolidation often leads to us paying more– and often for lousier healthcare. Moe Tkacik has been reporting on that kind of gobbling– and recently, she’d been looking at how the state of Oregon had been trying to slow it down. Then, in January 2024, a good-size medical group in Corvallis, Oregon said they were ready for United to gobble them up. The group is called the Corvallis Clinic, and it’s got more than a hundred docs. But United and the Clinic would have to go through a whole process to get approval from state regulators. That process includes: regulators asking the public for comments on the transaction. And in this case… 

Maureen Tkacik: they were. inundated with comments. 

Dan: Like 378 of them in just a few weeks. And the comments were overwhelmingly AGAINST the sale. In February, the regulators sent United and Corvallis a 5-page list of conditions under which they might approve a deal. A source of Moe’s sent me the document, which he got through a public-records request. The conditions are like, to not reduce service levels in the community for at least 10 years. To keep accepting non-United insurance. And to submit to a lot of monitoring. Then, as negotiations were starting, Change Healthcare went offline. And in early March, Moe got a tip: The clinic and United were gonna make an end run around this process. She talked with an anonymous insider at the clinic. Who told her: It turns out that all of the clinic’s billing had been connected to Change. 

Maureen Tkacik: So we’re talking about just a calamitous cash crunch. Their revenue came to a standstill 

Dan: And by the time Moe’s insider source learned what was up– this had been going on for two weeks. 

Maureen Tkacik: this source said that , Thursday, they all had a meeting and they were not sure they were going to be able to open their doors the following Monday. 

Dan: That was Thursday March 7. The next day, March 8th, lawyers for Corvallis Clinic filed an application for an emergency exemption from the normal review process. A week later, they got that exemption. And this time regulators had not demanded any conditions. As Moe’s story laid out, United’s problem– the Change Healthcare hack– became everybody’s problem, including Corvallis. And their problem seemed to have become United’s opportunity. To gobble up the practice without having to agree to any conditions from pesky regulators. And a postscript to the Corvallis Clinic story: Shortly after regulators approved that deal, United sent notices to thousands of patients at another clinic it had taken over in nearby Eugene, saying basically: We don’t have a doctor for you anymore. Goodbye and good luck. News reports said that clinic had lost more than 30 doctors since United took over. And among the public comments urging regulators to kibosh the Corvallis clinic, a bunch of people cited lousy experiences at that Eugene clinic under United’s ownership. This is the kind of thing that Moe Tkacik and her colleagues at the American Economic Liberties Project– and what’s become a kind of anti-monopoly movement– want to change. And here’s where this episode becomes maybe just a little less of a horror story, and maybe a little more of an action movie. Because the anti-monopoly movement has gotten a big backer in the last three years: The Biden Administration. In 2017, a woman named Lina Khan made a name for herself in legal circles when she published a paper arguing that Amazon had become the kind of super-dominant company that antitrust laws were designed to constrain. Lina Khan was a law student when she published that paper. In 2021, Joe Biden appointed her to lead the Federal Trade Commission. The FTC and the Department of Justice split the job of antitrust enforcement, and they’ve both become super-aggressive. They’ve filed big lawsuits against Google, Amazon, and– in March of this year– Apple. And gotten a fair amount of attention. As we were writing up this episode, Jon Stewart interviewed Lina Khan on “The Daily Show.” And here’s how she described her approach in that conversation. 

LK: We’ve really focused on how companies are behaving. Are they behaving in ways that suggest they can harm their customers, harm their suppliers, harm their workers, and get away with it? And that type of too big to care type approach is really what ends up signaling that a company has monopoly power because they can start mistreating you, but they know you’re stuck. 

Dan: Earlier this year, the Wall Street Journal reported that Lina Khan’s allies– antitrust folks at the Department of Justice are investigating United. Neither the Justice Department nor United has commented on that report. Meaning: Nobody’s denied it. So far, some of the Biden administration’s antitrust lawsuits have pan out, and some haven’t. Actually, in 2021, the Justice Department sued to prevent UnitedHealth Group from buying Change Healthcare. That one, they lost. But when the sued to block Penguin Random House from buying another giant publisher, Simon and Schuster, they won. And as Lina Khan told Jon Stewart, she and her colleagues aren’t just suing to prevent mergers. They sued to get infamous Pharma Bro Martin Skhreli banned for life from the pharma trade. And they won. And they’re looking at other ways big companies, especially in health care, screw people. 

LK: Just to give you one example, inhalers. They’ve been around for decades, but they still cost hundreds of dollars. So our staff took a close look and we’ve realized the, some of the patents that had been listed for these inhalers were improper. There were bogus. And so we sent hundreds of warning letters around these patents. And in the last few weeks, we’ve seen companies deal list these patents and three out of the four major manufacturers have now said, Within a couple of months, they’re going to cap how much Americans pay to just 35. 

Dan: I think we should start paying a lot more attention to what Lina Khan and her colleagues are up to– and what their chances are. I’ve started reading up, and getting in touch with folks who are in this fight, and who are watching it closely. Because this is looking like the kind of action movie I kind of like. Meanwhile, I’m posting a link to Jon Stewart’s interview with Lina Khan wherever you’re listening to this. I’ll have a few other links for you in our newsletter– you can sign up for that at arm and a leg show dot com, slash, newsletter. And I’ll catch you in a few weeks. Till then, take care of yourself. 

This episode of an arm and a leg was produced by me, Dan Weissmann, with help from Emily Pisacreta, and edited by Ellen Weiss. Big thanks this time to the novelist, journalist and activist Cory Doctorow, who has been writing about the antitrust revival for years, breaking down complex, technical stories in clear, accessible ways. Thanks to professor Spencer Waller from the Loyola University Chicago law school for talking about antitrust with me. And thanks to Dr. John Santa in Oregon– for sharing material he got via a public-records request to the state, and for his observations. Adam Raymonda is our audio wizard. Our music is by Dave Weiner and blue dot sessions. Extra music in this episode from Epidemic Sound. Gabrielle Healy is our managing editor for audience. She edits the first aid kit newsletter. Bea Bosco is our consulting director of operations. Sarah Ballama is our operations manager. And Armand a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in depth journalism about healthcare in America and a core program at KFF, an independent source of health policy research, polling and journalism. Zach Dyer is senior audio producer at KFF Health News. He’s editorial liaison to this show. And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor, allowing us to accept tax exempt donations. You can learn more about INN at INN. org. Finally, thanks to everybody who supports this show financially– you can join in any time at arm and a leg show dot com, slash, support– and thanks for listening.

“An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.

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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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Una mañana de enero de 2021, Carol Rosen recibió un tratamiento estándar para el cáncer de mama metastásico. Murió después de tres semanas de sufrimiento, con un dolor insoportable causado por la misma droga que debería haber ayudado a prolongar su vida.

Rosen, maestra jubilada de 70 años, pasó sus últimos días angustiada, sufriendo de diarrea intensa, náuseas y dolorosas llagas en la boca que le impedían comer, beber y, finalmente, hablar. La piel se le desprendía del cuerpo. Sus riñones y su hígado habían dejado de funcionar. “Tu cuerpo arde desde”, dijo la hija de Rosen, Lindsay Murray, de Andover, Massachusetts.

Rosen fue una de los más de 275,000 pacientes con cáncer en los Estados Unidos a quienes cada año se les administra fluorouracilo, también conocido como 5-FU, o que toman un medicamento casi idéntico en forma de pastilla llamado capecitabina, como ella lo hacía.

Estos tipos de quimioterapia comunes son difíciles de tolerar en general, pero para los pacientes que tienen deficiencia de una enzima que metaboliza la droga, puede ser una tortura o causar la muerte.

La toxicidad por fluorouracilo ocurre porque los medicamentos permanecen en el cuerpo durante horas en vez de ser metabolizados y excretados rápidamente.

Se estima que las drogas matan a 1 de cada 1,000 pacientes que las toman —cientos de personas cada año— y hacen que 1 de cada 50 pacientes se enfermen gravemente o deban ser internados. Los médicos pueden realizar pruebas para detectar la deficiencia y obtener resultados en una semana, y así determinar si cambiar de medicamento o reducir la dosis para los pacientes que tienen la variante genética asociada con el riesgo.

Sin embargo, una encuesta reciente encontró que sólo el 3% de los oncólogos piden las pruebas de forma habitual antes de administrar 5-FU o capecitabina a sus pacientes. Esto se debe a que las pautas de tratamiento del cáncer más aceptadas en el país, emitidas por la Red Nacional Integral del Cáncer, no recomiendan las pruebas de manera preventiva.

La Administración de Alimentos y Medicamentos (FDA) agregó nuevas advertencias sobre los riesgos letales del 5-FU a la etiqueta del medicamento el 21 de marzo pasado, después de consultas de KFF Health News sobre la política de la agencia con respecto a la droga. Sin embargo, no exigió que los médicos realicen la prueba antes de recetar tratamientos de quimioterapia.

La agencia, cuyo plan para reforzar la supervisión de las pruebas de laboratorio fue abordado en una audiencia en la Cámara de Representantes, también el 21 de marzo, dijo que no podía recomendar las pruebas de toxicidad del 5-FU porque nunca las había revisado.

Pero actualmente la FDA no revisa la mayoría de las pruebas de diagnóstico, dijo Daniel Hertz, profesor asociado de la Escuela de Farmacia de la Universidad de Michigan. Durante años, Hertz, junto con otros médicos y farmacéuticos, ha solicitado a la FDA que agregue la máxima advertencia (llamada “caja negra”) a la etiqueta del medicamento, para instar a los profesionales que lo recetan a realizar las pruebas para detectar la deficiencia de la enzima.

“La FDA tiene la responsabilidad de asegurar que los medicamentos se utilicen de forma segura y eficaz”, dijo. La falta de esta advertencia, afirmó, “es una abdicación de su responsabilidad”.

Las nuevas advertencias son “un pequeño paso adelante, pero no el cambio radical que necesitamos”, afirmó.

Europa lidera en seguridad

Las autoridades farmacéuticas británicas y de la Unión Europea recomiendan la prueba desde 2020. En Estados Unidos, un número pequeño pero creciente de hospitales, grupos profesionales y defensores de la salud, incluyendo la Sociedad Americana del Cáncer, también recomiendan las pruebas de forma rutinaria.

La mayoría de las aseguradoras estadounidenses, tanto públicas como privadas, cubren las pruebas, que Medicare reembolsa por $175, aunque pueden costar más dependiendo de cuántas variantes detectan.

En sus últimas directrices sobre el cáncer de colon, el panel de la Red Nacional Integral del Cáncer señaló que no todas las personas que portan la variante genética se enferman cuando toman el medicamento, y que recetar dosis más bajas para estos pacientes podría privarlos de curarse o de tener una remisión del cáncer. Muchos médicos del panel, incluyendo Wells Messersmith, oncólogo de la Universidad de Colorado, dijeron que nunca han registrado una muerte por 5-FU.

En los hospitales europeos, se empieza con la mitad o un cuarto de la dosis de 5-FU para los pacientes cuyas pruebas muestran que metabolizan la droga lentamente. Luego, se aumenta la dosis si el paciente responde bien al medicamento. Los defensores de este abordaje dicen que las autoridades estadounidenses de oncología están demorando el tratamiento innecesariamente, y perjudicando a las personas.

“Creo que se trata de una terquedad de parte de las personas que participan en estos paneles”, dijo Gabriel Brooks, oncólogo e investigador del Dartmouth Cancer Center. “Piensan: ‘Somos oncólogos, los medicamentos son nuestras herramientas, no queremos buscar razones para no usar nuestras herramientas’”.

Los oncólogos están acostumbrados a la toxicidad de la quimioterapia y tienden a tener una actitud de “sin dolor no hay recompensa”, dijo. El 5-FU se utiliza desde la década de 1950.

Por otro lado, “cualquiera que haya perdido un paciente de esta manera va a querer someter a todos a las pruebas”, dijo Robert Diasio, de la Clínica Mayo, quien ayudó a realizar importantes estudios sobre la deficiencia genética en 1988.

Muchos oncólogos utilizan las pruebas genéticas para determinar cuál de los costosos medicamentos disponibles usar para reducir el tamaño de un tumor. Pero no siempre sucede lo mismo con las pruebas genéticas destinadas a mejorar la seguridad de los medicamentos, dijo Mark Fleury, director de políticas de Cancer Action Network, una organización defensora sin fines de lucro de la Sociedad Americana del Cáncer.

En el caso de medicamentos nuevos, cuando se trata de pruebas para determinar si son apropiados para cada paciente, “hay muchas más fuerzas alineadas para que se realicen estas pruebas”, dijo Fleury. “Pero estas fuerzas y grupos interesados no están involucrados” con una droga genérica como el 5-FU, que fue aprobada por primera vez en 1962 y cuesta aproximadamente $17 por mes.

Carol Rosen fue una de más de 1,000 pacientes tratadas con fluoropirimidina en 2021.

Su hija estaba desconsolada y furiosa después de la muerte de Rosen. “Quería demandar al hospital. Quería demandar al oncólogo”, dijo Murray. “Pero me di cuenta que eso no era lo que mi mamá hubiera querido”.

Le escribió al director de control de calidad del Dana-Farber, Joe Jacobson, para instarlo a realizar las pruebas de forma rutinaria. Jacobson respondió el mismo día, y el hospital adoptó rápidamente un sistema de pruebas que ahora cubre a más del 90% de los pacientes que podrían ser tratados con fluoropirimidina. Se detectaron alrededor de 50 pacientes con variantes de riesgo en los primeros 10 meses, dijo Jacobson.

Dana-Farber utiliza una prueba de la Clínica Mayo que detecta ocho variantes potencialmente riesgosas del gen. Los hospitales de Veterans Affairs utilizan una prueba que detecta 11 variantes, mientras que la mayoría de los demás identifican sólo cuatro variantes.

Distintas pruebas para distintas ascendencias

Cuantas más variantes detecte una prueba, mejores son las posibilidades de encontrar variantes genéticas menos comunes en poblaciones étnicamente diversas. Por ejemplo, las deficiencias más peligrosas en personas de ascendencia africana y europea, respectivamente, son causadas por distintas variantes.

Hay pruebas que pueden identificar cientos de variantes que afectan el metabolismo de la droga, pero tardan más y son más caras.

Estas son tristes realidades para Scott Kapoor, un médico de urgencias que vive cerca de Toronto cuyo hermano, Anil Kapoor, murió en febrero de 2023 de toxicidad por 5-FU.

Anil Kapoor era un conocido urólogo y cirujano, investigador, médico y un amigo divertido: a su funeral fueron cientos de personas. Su muerte a los 58 años, unas pocas semanas después que le diagnosticaran cáncer de colon en estadio 4, sorprendió y enfureció a su familia.

El sistema de salud de Ontario, donde se trató Kapoor, recién había empezado a realizar pruebas para detectar cuatro variantes genéticas, identificadas por estudios desarrollados en poblaciones principalmente europeas. Anil Kapoor y sus hermanos, hijos de inmigrantes de la India nacidos en Canadá, son portadores de una variante genética que parece estar asociada con las personas de ascendencia del sur de Asia.

Scott Kapoor apoya pruebas más extensas para detectar la mutación, ya que sólo alrededor de la mitad de los habitantes de Toronto son de ascendencia europea, y sostiene que el antídoto contra la toxicidad por fluoropirimidina, aprobado por la FDA en 2015, debería estar fácilmente disponible.

Sin embargo, este antídoto sólo funciona por unos días después del consumo del fármaco, y los síntomas definitivos suelen tardar más tiempo en aparecer.

Lo más importante, dijo, es que los pacientes estén al tanto del riesgo. “Les dices: ‘Te voy a dar un medicamento que tiene una probabilidad de 1 entre 1,000 de matarte. Puedes hacerte esta prueba’. La mayoría de los pacientes dirán: ‘Quiero hacerme esa prueba y la pagaré’, o simplemente: ‘Reduzca la dosis a la mitad’”.

Murray percibe un impulso por las pruebas obligatorias. En 2022, la Universidad de Ciencias y Salud de Oregon pagó $1 millón para resolver una demanda tras una muerte por sobredosis.

“Lo que va a romper esa barrera son las demandas y las grandes instituciones como Dana-Farber que están implementando programas y viendo cómo tienen éxito”, dijo. “Creo que los proveedores se sentirán acorralados. Van a seguir escuchando a las familias y tendrán que hacer algo al respecto”.

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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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.”

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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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.

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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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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