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Last year, Baltimore had three mass overdose incidents in the span of three months in its Penn North neighborhood.

In one incident, more than two dozen people were hospitalized after many were found unresponsive, lying in the streets or on sidewalks. No one died, but some came close.

Follow-up testing found that the street drugs contained high levels of N-methylclonazepam, a benzodiazepine that operates similarly to Xanax or Valium. Like opioids, benzodiazepines suppress breathing. When they’re combined, the risk of overdose goes up. And benzodiazepines don’t respond to opioid overdose reversal drugs.

Afterward, the Baltimore Harm Reduction Coalition created test strips specifically for benzodiazepines. The group distributed them — along with test strips that identify other harmful adulterants, such as fentanyl, xylazine, and medetomidine — at clinics and neighborhood events. The strips, available at no cost, can also be found in bars and spread out on street corners. People testing drugs mix a small amount with water and then dip a test strip into the liquid. The strip will change color if it identifies an adulterant.

“Nobody really knows what they’re getting whenever they’re getting stuff off of the street,” said Candy Kerr, a spokesperson for the coalition. “Having the test strips available for the general public gives them the option to move slower if they’re going to use whatever they’re going to use.”

A box with free drug test strips, used to detect fentanyl and other harmful adulterants, sits outside the Chesapeake Detention Facility in Baltimore. Many health advocacy groups try to give the strips to people leaving incarceration, to avert overdoses. (Scott Maucione/WYPR)But a new federal policy could make it harder for organizations such as Kerr’s to give out the test strips, and they’re worried that overdoses could increase. In late April, the Substance Abuse and Mental Health Services Administration banned the use of federal grants for distributing strips to the public and for some other harm reduction practices that have been credited with saving lives. Test strips have been used for nearly 10 years to identify adulterants.

A letter sent to local health departments and nonprofits that provide addiction services explained that the Trump administration believes those harm reduction practices “facilitate illicit drug use and are incompatible with Federal laws.”

According to the letter, grants from the Department of Health and Human Services also cannot be used for programs that support the use of clean needles or drug paraphernalia such as pipes, or to fund a type of specialized hotline that people can call while taking drugs, so someone is aware and can call for help if they overdose.

The Trump administration wants to focus more on other techniques, such as giving out naloxone, an overdose reversal drug available as a nasal spray, according to Emily Hilliard, an HHS spokesperson.

“It is critical that federal funding provided by the American taxpayer goes to effective, common-sense solutions that have been proven to save lives and keep people out of an endless cycle of addiction and moves them into a life of recovery,” she said.

The new policy does not prohibit federal funds from being used to purchase test strips for use by law enforcement officers, public health officials, EMTs, or other medical professionals.

That creates an important exception for government agencies that test drugs and send out regular reports on what adulterants are saturating the drug supply in certain locations.

Still, Yngvild Olsen, who oversaw SAMHSA’s Center for Substance Abuse Treatment in the Biden and Trump administrations, says there is a substantial body of evidence that shows giving test strips to people who use drugs can change behavior.

“There’s some people deciding not to use the substances, some people deciding to reduce, to use less, or take other types of precautions, including naloxone, and making sure that there are people around that can actually then help in the case of an overdose,” Olsen said.

Kerr said the best approach would be to continue to promote the use of test strips while also continuing to give out lifesaving medications like naloxone. She believes that working on all fronts has helped lead to Baltimore’s decline in overdose deaths, which have dropped more than 40% since 2023.

Naloxone, an overdose reversal drug, is spread out on a street corner for people to take after a 2025 mass overdose incident in Baltimore’s Penn North neighborhood. (Scott Maucione/WYPR)Under the new policy, nonprofits will still be able to hand out test strips, but they will have to find other funding for that work, which Kerr finds worrisome.

“We’ve been making these strides forward because we’ve had these things, because we’ve been funded,” she said. “We’re going to have to pull money from other places.”

To pay for the test strips, Kerr said, the Baltimore Harm Reduction Coalition will have to cut back on services such as giving out hygiene and wound care kits. But she said that option is better than risking another mass overdose in Baltimore — or allowing even just one preventable fatality.

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

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

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HOT SPRINGS, S.D. — Two of the nation’s most powerful health officials predict artificial intelligence will play a key role in solving rural America’s health challenges.

Health secretary Robert F. Kennedy Jr. told a panel of U.S. senators that AI nurses can provide “concierge care” to rural patients. Mehmet Oz, who leads the Centers for Medicare & Medicaid Services, has said “the best way to help some of these communities is going to be AI-based avatars” that connect rural patients to mental health services.

And many state health leaders agree. They are using some of their funding from the $50 billion federal Rural Health Transformation Program to expand AI among rural health organizations.

AI is computer technology that performs tasks that typically rely on human intelligence by finding patterns or generating words. It has the potential to improve the healthcare system by automating back-office work or identifying patients at risk, but several reports contend there’s little evidence AI can improve access to care and patient health in rural areas. It’s unclear how well states will track and share outcomes of the tech they invest in.

Meanwhile, some rural Americans are skeptical, according to interviews with people in Hot Springs, South Dakota, a city of about 3,400 residents at the southern end of the Black Hills.

“I get artificial intelligence for certain things, but for personal healthcare — no,” Tara Haffner said while standing outside the American Legion.

Haffner said she’s worried about AI making mistakes and wants healthcare to stay between her and her doctor.

But Phillip Mues, who oversees technology at Cherry County Hospital and Clinic in rural Valentine, Nebraska, said AI is already helping clinicians save time, reduce burnout, and focus more on patient care.

“I think it will help reduce burden on actual staffing,” he said. “It won’t replace people, but I think it will help in rural communities.”

Still, Mues said, AI can’t fix every challenge. Rural hospitals at risk of closing or ending certain services probably can’t use AI to save enough money to prevent those consequences, he said.

Congressional Republicans created the five-year Rural Health Transformation Program last summer as a last-minute sweetener to President Donald Trump’s signature One Big Beautiful Bill Act. The funding was intended to offset concerns about the outsize fallout anticipated in rural communities from the law, which is expected to reduce overall Medicaid spending by more than $900 billion over a decade.

The Word on the Street

Hot Springs, which has a 25-bed independent hospital and a Department of Veterans Affairs hospital, is known for its sandstone buildings, veterans’ services, and, yes, hot springs. Residents must drive at least an hour for more advanced care.

Six people interviewed there by KFF Health News said the biggest problem in rural healthcare is the cost or long wait times caused by staffing shortages.

Doug Nikkila, a heavy equipment operator, said AI and other technology come with benefits and risks.

“If it’s not utilized correctly, it becomes a burden,” he said.

Nikkila, who’s concerned about nursing home residents being neglected amid staffing shortages, said he thinks AI should send reminders to staff when their residents are due for diaper changes or other care. He also wondered whether AI-powered video monitors could send alerts when they detect falls or illness symptoms.

The healthcare industry is rapidly adopting AI despite the tools being “poorly evaluated,” according to a recent report from ARISE, a Stanford- and Harvard-led group that evaluates health-related AI. The report says that while some AI has been successful in controlled settings, there’s less evidence it can perform in the real world. It also said few studies track patient outcomes.

Evidence is especially lacking in rural areas. A recent academic paper found that only 26 peer-reviewed studies about AI in rural healthcare were published from 2010 through April 29, 2025. Few analyzed implementation or outcomes.

Despite the dearth of results, some states appear interested in bold experiments — such as using AI to suggest diagnoses or recommend treatments. Utah officials said in their application to the rural health program that they are interested in funding a controversial experiment in AI-powered prescription refill requests.

Even tools proven to work in urban settings may not work in rural ones, said Qian Huang, an assistant professor at the Center for Rural Health and Research at East Tennessee State University.

She said the technology is usually tested at large, academic hospitals and trained on data from urban patients, who may not have the same health issues and obstacles — such as a lack of transportation — as rural patients.

A KFF Health News review of states’ plans for the Rural Health Transformation Program shows they’re interested in using AI to automate time-consuming, behind-the-scenes tasks, such as medical charting, coding, referrals, and prior authorization requests. Some states also mentioned ways AI can save money, such as Washington, which discussed tools that “identify and recover” money it’s owed.

Mues said the Valentine clinic has been using AI scribes that record appointments and generate notes describing the visit. He said surveys of clinicians before and after they started using the technology show the scribes have helped reduce burnout by letting providers focus on patient care with “eye contact on the patient, not the computer.”

States also mentioned funding AI that directly affects patient care, such as tools that recommend possible diagnoses and treatment options to clinicians. Mississippi wants to use predictive AI algorithms to “guide” emergency medics with “triage, routing, and treatment decisions.”

Several states want to use AI to analyze patients’ medical charts and remote monitoring devices to identify immediate or future health risks. North Dakota’s plans mention AI to “detect early signs of chronic disease and behavioral health conditions,” while New Hampshire’s discusses AI that identifies patients “at high risk of adverse drug events.”

Some states plan to give patients access to chatbots or wearable devices that transmit data to their clinicians. Utah is interested in funding AI-powered fetal-monitoring devices, while Kentucky will explore using AI chatbots to “deliver personalized nudges and education” through “health coaching, gamified incentives, and rewards.”

Whether the technology appeals to consumers is another matter. Hot Springs resident Stephanie Keller wears a smartwatch to track her fitness but has no interest in an AI chatbot using her data to encourage her to reach her health goals.

“I don’t have the time to chat with AI every day. I mean, are you kidding me? I don’t want to spend my time on a cellphone,” she said.

Rural health facilities also face challenges in implementing AI.

Huang, who has written about AI in rural healthcare, said rural hospitals and clinics may not have the hardware or IT staff needed to support the technology. She said clinicians and staff may already be doing three jobs at once and not have time to go through AI training.

Rural health facilities may not have fast-enough internet to use AI, while patients may have slow connections at home — if they have internet at all — or may not feel comfortable using AI, Huang said.

“In rural communities, trust and a personal relationship is essential,” she said.

Roy Ehlers, a Hot Springs resident, said he doesn’t trust AI in healthcare, or anywhere else.

“I’m old-fashioned. I don’t believe in it. Technology is not my forte,” Ehlers said.

Mues said that while some rural patients are “scared of AI,” most have let their clinicians at the Valentine facility use the scribing technology to record patients’ visits.

Will States Share AI Results?

Despite questions about implementation, the boom is on. Jordan Everson, an assistant professor at the Georgetown University Department of Family Medicine, said both urban and rural health facilities are rushing to use AI.

“The risk of signing contracts that rural healthcare organizations come to regret is pretty high,” said Everson, who previously worked in the information technology office at the U.S. Department of Health and Human Services.

Several states are addressing that risk by using their rural health funding to create groups that will help rural health facilities vet, select, or monitor AI tools while offering training, ongoing assistance, or funding for upfront costs.

CMS spokesperson Timothy Foster said the agency doesn’t have any AI-specific reporting requirements but is working on a form for states to report their overall progress and outcomes.

Abraham Pritzker, who works at Julota, a company that helps health organizations track data, said states should measure more than how often AI programs are used.

For example, states can measure whether the tech reduces falls, 911 calls, or hospital admissions, said Pritzker, a former paramedic. Huang said it’s also important to ask clinicians and patients about their experiences using AI.

Yet many states’ applications to the rural health program mention tracking only AI adoption metrics, not what happens after facilities deploy the tech. Some of these states may add further reporting requirements down the road.

Vermont spokespeople did not respond when asked why their state’s funding opportunity for AI scribes requires organizations to report only how many clinicians and patients are served by the tech, not how much time they save.

States requiring recipients to report outcomes include Connecticut, which will track how often AI-powered patient monitoring devices trigger accurate alerts. Texas will require organizations to track cost savings, while Wisconsin lists “patient outcomes” and “productivity and efficiencies” as possible metrics.

Huang said that after collecting results, states need to share them so other states and healthcare organizations can learn from their experiences.

“We do not have a lot of resources to waste on tools that don’t work in rural areas,” 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.This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

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Doula Taja Iglesias and her business partner have built a space in Alexandria, Virginia, that’s all things pregnancy, birth, and childcare.

Comfortable couches in one area invite expectant parents to settle in for birth education classes. In another, a colorful pile of toys await the babies and toddlers. And there’s a free supply of diapers and food. Years ago, as Iglesias was giving birth and expressing her wish not to have an epidural for pain, she felt isolated and that her preferences were dismissed by the medical staff. Today, she works hard to make sure other parents can have the support of a doula.

“We kind of created this to fill the gaps that we realized existed because we had to go through it,” Iglesias said. She’s the founder of The Momager Co., a doula agency dedicated to giving parents care throughout the perinatal process.

Iglesias said one of the widest gaps is the lack of access to doula care for parents on Medicaid.

Doula care has been associated with improved breastfeeding initiation and less maternal anxiety. The perinatal doula care covers education about pregnancy and birth, advocacy for new parents in the hospital, and help after delivery with lactation and recovery. Doulas often work alongside doctors or midwives who provide medical care.

“The doula is the person that already knows what you want. We know what your dream birth is,” Iglesias explained. “We’re somebody that is standing on the side of the parent.”

Doula Taja Iglesias, founder of The Momager Co., a doula agency, offers some of her services from a welcoming space in Alexandria, Virginia. (Lynne Shallcross/KFF Health News)(Lynne Shallcross/KFF Health News)Your browser does not support the audio element.Can’t see the audio player? Visit kffhealthnews.org to listen.

In 2022, Virginia became the fourth state to start reimbursing doulas through Medicaid. A push to address the country’s maternal mortality rates, which are higher than in other high-income countries, has been an engine for lawmakers looking to give women on Medicaid the support of doula care. For example, another Virginia law requires hospitals to allow an extra person, other than a family member, in the delivery room.

The services offered and the number of visits covered by Medicaid vary by state, but today doulas are covered in 26 states and Washington, D.C. An additional 20 states have considered proposals or are in the process of implementing similar policies.

In Virginia, doulas say the administrative and logistical challenges they encounter are trickling down to moms. A review of the Virginia Certification Board’s Doula Registry this June found just 19 doulas based in Northern Virginia accept payment from Medicaid.

Doulas say that while Medicaid coverage of their services is a good first step, the amount of paperwork required in the approval process and the low reimbursement rates mean that fewer doulas participate in the Medicaid program, reducing access for beneficiaries.

A 2021 law that extended doula benefits to Medicaid enrollees sought to improve the health of Virginia parents and decrease the number of mothers who die during the time surrounding birth. The state’s maternal mortality rate is among the nation’s highest.

As co-chair of the state’s task force on doula regulations, Iglesias helps shape policies that make it easier for moms on Medicaid to get doula care through the program.

To access doula services in Virginia, parents on Medicaid must have a referral from a doctor, and their doula must be approved by the state to care for Medicaid beneficiaries. Iglesias would like to see that process be quicker and less costly for doulas, who pay $75-$150 for certification.

While the policy debates continue, Iglesias has decided not to get certified to care for parents on Medicaid. Instead, she raises money to provide doula care for parents on Medicaid outside the system.

“I don’t want to be state-certified with a training that I feel is not full and complete, a training that doesn’t touch on that community aspect of work,” she said.

Iglesias said the services covered are too limited and Medicaid does not allow her to work with clients as she sees fit. Virginia’s payment covers up to eight doula visits. All but the first visit are limited to one hour, which Iglesias said isn’t enough time.

“If you want to actually build a relationship with this person that you’re going to be standing in with in their most vulnerable moment, it ain’t happening,” Iglesias said.

Informational pamphlets are displayed at The Momager Co., which offers appointments and group classes. (Lynne Shallcross/KFF Health News)The Momager Co. operates a store with free postpartum provisions, maternity clothes, baby essentials, and breast/chestfeeding supplies, as well as food and hygiene items. (Lynne Shallcross/KFF Health News)Donated baby clothing is available free to parents at the Alexandria, Virginia-based doula agency. (Lynne Shallcross/KFF Health News)While pursuing her PhD at George Mason University, Desirae Leaphart Mensah studied the initial implementation of the doula reimbursement policy in Virginia.

Mensah collected data from 2022 to 2024 for a study published this year. She interviewed doulas eager to serve clients on Medicaid. But some told her they got bogged down in the paperwork and never were certified. Doulas report similar struggles with the certification process today.

Mensah said the mismatch between the size of the Medicaid population in Northern Virginia and the low number of doulas available leads to fewer parents receiving doula care.

Coverage is a good first step, Mensah noted, but it doesn’t translate to enough access. During the first two years of implementation, fewer than 1% of Medicaid births in Virginia used doula services. That study is the latest available.

Kenda Denia, executive director of Birth in Color, a statewide doula collective in Virginia, welcomed the law at first.

“But now we’re looking at certain logistics that are not working,” Denia said.

Private-pay doulas in Virginia commonly charge $1,200 to $3,000 per pregnancy. For families wanting more extensive prenatal or postpartum services, the fee can be as much as $6,000. Virginia’s Medicaid program, also known as Cardinal Care, reimburses doulas $859 per pregnancy. They receive an additional $100 if their client attends prenatal and postpartum doctors’ visits.

The pay is too low and does not reflect the value of the services they provide, Denia said. “Midwives don’t get paid this. Doctors don’t get paid this,” she explained. “We are driving to people’s homes for postpartum and prenatal care.”

Doulas might wait weeks or months for reimbursement, and the pay is not flexible. The Medicaid reimbursement rate is the same across the state and does not capture the higher cost of living in areas like Alexandria. It’s roughly 32% more expensive in Alexandria than the average cost of living in Virginia, according to ERI Economic Research Institute, a private data analytics group.

Despite the barriers, Denia applauded parts of the policy. Medicaid coverage of doulas means that more parents can have a “birthing bestie,” she said.

Before getting pregnant, Juliana Navia had no idea what doulas did. But while at a free clinic for her prenatal checkups, Navia connected with Iglesias. Later, Iglesias became Navia’s doula and helped her navigate a difficult situation when she wasn’t getting the kind of care she wanted at the hospital.

“I was stressed giving birth, but my doula helped me,” Navia said. “I was advocated for.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

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Céline Gounder, KFF Health News’ editor-at-large for public health, discussed the cyclosporiasis outbreak on CBS News’ CBS Mornings on Aug. 5. Gounder discussed New Mexico’s measles outbreak on CBS News 24/7’s The Daily Report on Aug. 4. She also discussed peptides on Ideastream Public Media/WKSU’s Sound of Ideas on Aug. 3.

• Click here to watch Gounder on CBS Mornings.
• Click here to watch Gounder on The Daily Report.
• Click here to hear Gounder on Sound of Ideas.

KFF Health News chief Washington correspondent Julie Rovner discussed the end of a Biden-era Medicare Part D subsidy on WBUR’s Here & Now on Aug. 3.

• Click here to hear Rovner on Here & Now.

KFF Health News Southern correspondent Sam Whitehead discussed the new medical frailty work requirements on WUGA’s The Georgia Health Report on July 31.

• Click here to hear Whitehead on The Georgia Health Report.
• Read Whitehead’s “Doctors ‘Cringe’ at Possibility of Documenting Which Medicaid Enrollees Too Sick To Work.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

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Say you live in deep-red Louisiana, a state that has effectively banned abortion. It may be easier for you to get abortion pills now than before the Supreme Court overturned Roe v. Wade. Here’s why — and what it means for future battles over abortion access.

And as a federal court mulls a case that could result in significant restrictions on a pill used in most abortions, healthcare providers say they have alternatives to preserve access even in states with bans in place. Read more here.

A Ban Won’t Stop Abortion Pill Access, Telehealth Providers SayBy Kate WellsJune 24, 2026KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

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For years, Washington, D.C., has paid for Medicaid — the state-federal health insurance program for low-income people — out of its general budget. But next year, the city is shifting part of that recurring multimillion-dollar cost to a new funding source: opioid settlement dollars.

That’s raising red flags for addiction recovery advocates, people directly affected by the crisis, and the commission in charge of recommending how the city uses its share of the settlement money.

The opioid payouts come from a host of companies that made or distributed prescription painkillers and were accused of fueling the overdose crisis. State and local governments nationwide are set to receive more than $50 billion over almost two decades. Washington, D.C.’s cut is expected to exceed $100 million.

The money is meant to remediate the addiction crisis, often by increasing services or funding new programs.

But many states are facing increasing fiscal pressures as they are squeezed by inflation, federal funding cuts, and rising costs. Some officials have been tempted to turn to opioid settlement cash as a budget stopgap — an idea that can trigger opposition and outrage from recovery advocates and people who have struggled with opioid addiction and their family members.

“These funds were awarded to D.C. for very specific reasons and with a specific mandate, which are to remediate issues related to the opioid crisis in new and innovative ways,” said Queen Adesuyi, a partner at Reframe Health and Justice, a consulting group for community-based organizations, who is crying foul over the proposed fiscal year 2027 budget.

A document provided to KFF Health News shows line items in the district’s fiscal 2027 budget that would direct about $2.3 million in opioid settlement funds to help pay for the city’s Medicaid contribution and at least $5.5 million to support addiction treatment centers previously funded through the general budget. Substituting opioid settlement dollars for general funding keeps overall spending on treatment flat instead of increasing.

“Opioid settlement dollars are not meant to be a rainy-day fund for existing government obligations,” said Shelly Weizman, associate director of the Center on Addiction and Public Policy at Georgetown Law’s O’Neill Institute.

More than 80 individuals and 30 city organizations signed a letter protesting this use of settlement dollars, saying the district’s Department of Behavioral Health planned to spend opioid cash to “pay off its own debts.” The letter was sent to DBH Director Barbara Bazron; the chair of the D.C. Council’s Committee on Health, Christina Henderson; and Attorney General Brian Schwalb.

Chad Jackson, himself in recovery, chairs the district’s Opioid Abatement Advisory Commission, which was created to advise the city on how to spend its settlement dollars. Jackson called the latest move supplantation, a budgeting tactic that shifts money from one fund to another to free up dollars.

“If the opioid settlement funds were not there, I feel pretty confident that these things would have been funded, because they have to be funded,” Jackson said.

What’s happening now is against the district’s opioid litigation law, he said.

The law says that money from the district’s opioid abatement fund “shall supplement, and not supplant.”

“It’s a pretty tightly written law where the intent is very clear: Do not supplant,” Weizman said.

Adesuyi, an advocate for programs that help people who use drugs, said the council is flouting that law and that it’s a “slap in the face.”

Queen Adesuyi is a Washington, D.C.-based harm reduction advocate and partner at Reframe Health and Justice, a consulting group for community-based organizations. At the July 15 meeting of the Opioid Abatement Advisory Commission, they speak against the city’s use of opioid settlement dollars to fill budget holes. (Aneri Pattani/KFF Health News)Councilmember Henderson and Attorney General Schwalb weighed in too.

“We are also concerned that DBH may be using the settlement monies for other unauthorized purposes,” they wrote in a July 17 letter to the department. They highlighted the $2.3 million used to cover the city’s Medicaid contribution and asked the department to explain by July 31 how it determined that was legal.

It’s unclear whether the Department of Behavioral Health met that deadline. DBH, Henderson’s office, and the attorney general’s office did not respond to that specific question.

However, DBH spokesperson Denise Reed said in a statement that the department is “committed to compliance with all statutory requirements governing opioid settlement funds.” The department’s general position has been that its budget was approved by the council, and that the funding supports efforts that counter opioid addiction.

The council in June “passed a legally-certified budget for the next fiscal year that makes the best use of all local resources, including the opioid settlement fund, to award grants to 17 community-based providers who last year served nearly 9,800 residents including 3,500 in medication-assisted treatment for opioid addiction,” Reed told KFF Health News.

The district’s budget is pending a 30-day “congressional review,” which is the last step in its annual budgeting process.

Still, some residents like Adesuyi want more accountability for how the opioid money is spent.

“The drug supply is getting a lot more unpredictable, which calls for some nimbleness, and it calls for interventions that are more courageous. Unfortunately, DBH is not meeting the mark when it comes to that,” Adesuyi said, adding, “It’s frustrating, it’s disappointing, and it’s enraging because people are dying unnecessarily in the district to overdose.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

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Aug. 6

Katheryn Houghton [CATH-er-in HOW-tun] reads the week’s news: Some older adults are seeking roommates to help them age in place. Plus, doctors say they shouldn’t be the ones determining if someone is too sick to comply with Medicaid’s new work rules.

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July 30

Zach Dyer [DYE-er] reads this week’s news: Health insurance companies promised to make it easier to get doctor-ordered care, but patients are still waiting. Plus, a common surgery might not be the best way to solve knee pain.

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July 23

Jackie Fortiér [FOR-tee-ay] reads this week’s news: Coverage disruptions can have fatal consequences when switching health plans. Plus, more states are shaming employers that use your tax dollars to cover health costs for their low-income workers.

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July 16

Sam Whitehead reads the week’s news: Some health plans are pocketing their enrollees’ drug discounts, while many Affordable Care Act insurers want to raise rates by double digits next year.

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July 9

Rachel Spears reads the week’s news: When babies receiving infant formula allegedly get sick or die, what happens next is largely up to the companies that make it. Plus, abortions continue to rise four years after the overturning of Roe v. Wade.

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July 2

Jackie Fortiér [FOR-tee-ay] reads the week’s news: More Americans than ever are surviving cancer and face lingering mental health issues. Plus, tips to get your health insurance company to pay for a GLP-1 drug.

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June 25

Zach Dyer [DYE-er] reads the week’s news: The U.S. is getting its first new sunscreen ingredient in decades. Plus, at-home cancer tests have their limits.

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June 18

Katheryn Houghton [CATH-er-in HOW-tun] reads the week’s news: New rules that require millions of Americans to work to access Medicaid are stricter than many expected. Plus, the federal Family and Medical Leave Act protects many people’s jobs — but there’s a big catch.

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June 11

Sam Whitehead reads the week’s news: More Americans are getting access to physician-assisted suicide as states legalize the practice. Plus, hundreds of people allege medical neglect in ICE detention centers.

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June 4

Arielle Zionts [arr-ee-ELL ZY-ence] reads the week’s news: For some older adults, the risks of certain preventive screenings might outweigh the rewards. Plus, cost spikes for Obamacare plans have consumers seeking cheaper health coverage, which is often less comprehensive.

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May 28

Jackie Fortiér [FOR-tee-ay] reads this week’s news: Suicide prevention experts argue that improving Americans’ financial well-being could save lives. Plus, the Trump administration proposes looser artificial intelligence safeguards to speed innovation in healthcare.

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KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

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MISSOULA, Mont. — Tywon Pugh has seizures that make it hard to find and keep a job.

“They called me a ‘liability to the job site,’” Pugh said, recalling the words of his manager when a seizure cost him his last job at a fast-food restaurant in this western Montana city.

When the 46-year-old lost work in the past, his wife of 10 years covered their rent and he tended to their home until he found another job. But his wife died last year. Soon after, Pugh became homeless. His problem with alcohol became worse, which made managing his seizures more difficult.

“When she died, my whole base was depleted,” Pugh said.

Medicaid pays for the prescriptions that keep Pugh’s seizures at bay. The government-subsidized health coverage would also pay for an addiction treatment program that Pugh said he has tried to get into, but he was told there’s a waitlist.

Pugh’s goal has been to get healthy enough to work again. But he’s worried about being able to keep the Medicaid coverage he needs to get to that point.

Early Embrace of New Rules

In the spring, the federal government finalized regulations requiring millions of people who receive Medicaid benefits to prove they’re working, volunteering, or going to school to keep their coverage. States have until January to begin those checks. Montana, Arkansas, and Nebraska have already started implementing them.

The Trump administration’s federal work requirements exempt certain groups of people: those with disabilities, those older than 64, pregnant people and Native Americans, among others. To receive an exemption, anyone without a clear-cut qualification — such as through their age or disability status — will have to prove they’re too sick to work.

But the administration decided that being homeless isn’t a medical condition and can’t count as an automatic out from having to meet the new requirements. Many conservative policymakers support work requirements, and some states have attempted to implement such rules for years. At least four states — Montana, Arizona, Kentucky, and Utah — previously proposed policies that included homelessness as an exemption.

But federal officials have said that’s not allowed. In an email to KFF Health News, the Centers for Medicare & Medicaid Services declined to provide a comment on the record. But the agency confirmed that states must stick to the federal government’s list of exemptions. Homelessness in the U.S. increased by 27% from 2013 to 2025, according to data from the Department of Housing and Urban Development. Last year, about 746,000 people were homeless.

Many, like Pugh, qualified for Medicaid, though the number of enrollees who are homeless is difficult to measure. In 2023, 55% of patients who received medical or behavioral health services through one of the nation’s roughly 300 Health Care for the Homeless programs were enrolled in Medicaid.

“My Medicaid is still active, but when are they gonna cut that off from me? I can’t get employed,” says Tywon Pugh, who been homeless in Missoula since his wife’s death in 2025. The federal government does not exempt people who are homeless from Medicaid work requirements. (Katheryn Houghton/KFF Health News)Jennifer Tolbert, deputy director of KFF’s Program on Medicaid and the Uninsured, said the federal regulations are a lot stricter than many states had expected, even those on board with work requirements. (KFF is a health information nonprofit that includes KFF Health News.)

“It took everyone by surprise,” Tolbert said.

Mehmet Oz, who leads CMS, touted the regulations as a “path to prosperity” during a press conference in June.

“We need to get people to try to work,” Oz said. In June, 25 mostly Democratic-led states sued the Trump administration over the regulations, arguing the medical frailty standard would be too hard for enrollees to meet — and for states to assess. The work requirements are projected to increase the number of uninsured people nationwide by more than 5 million by 2034, according to the Congressional Budget Office.

Most states will begin to implement the Medicaid work requirements in January.

Montana plans to begin booting Medicaid enrollees from coverage this October if they can’t prove they’re in compliance with the work requirement.

“My Medicaid is still active, but when are they gonna cut that off from me?” Pugh said. “I can’t get employed. How am I supposed to survive?”

The differences between the states’ and federal government’s exemption lists don’t end with people who are homeless. In Montana, lawmakers also planned to excuse people fleeing domestic violence and caregivers of hospitalized family members — two other groups left off the federal exemption list.

“These are simply parties that, due to a number of conditions, cannot meet those requirements,” Republican state Rep. Ed Buttrey said in 2019 when the Montana Legislature passed its first Medicaid work requirement bill. Buttrey did not comment for this article.

Federal officials have said many people who are homeless could fall under another exemption, such as being too sick to work. But, like many states, Montana’s system to automatically conduct those checks through existing medical records isn’t ready, though health department spokesperson Jon Ebelt said it should be in place by October. Anyone not automatically exempted by the state would have 30 days to prove their case.

Flyers at Partnership Health Center locations in Montana announce eligibility changes to Medicaid. (Katheryn Houghton/KFF Health News)Partnership Health Center is one of roughly 1,400 health centers nationwide that receive federal funding to serve patients based on what they can afford. (Katheryn Houghton/KFF Health News)A Possible Exemption for Health

Pugh might qualify for a pass due to his seizures. But getting to doctor appointments the past year has been hard for him.

The anniversary of his wife’s death just passed. Typically, Pugh has to find a new place to sleep outside each night. One night while camping, Pugh lost his wallet and important documents. And with the addiction treatment centers that accept Medicaid patients overbooked, Pugh has had to rely on willpower to avoid drinking.

“I’m taking it one day at a time,” he said.

A little over two hours north, in Kalispell, Dustin Goss, a case manager at a homeless shelter called Samaritan House, said Pugh’s experience reflects why he’s worried that people who qualify for an exemption will get tangled in bureaucratic tape.

“You can’t really worry about getting paperwork done when you don’t know where you’re eating today,” Goss said.

Cassidy Kipp, who heads Samaritan House, said once people find shelter and start to stabilize, they typically find work. But even then, meeting the new requirements can be challenging. Clients often start with temporary and informal jobs — such as cleaning out a storage unit — that don’t come with a pay stub, Kipp said.

Kaitlyn Bosshardt, a social worker at Partnership Health Center, a health clinic in Missoula, has seen more people priced out of longtime rentals as housing costs outpace people’s paychecks. Meanwhile, affordable housing and rental aid are limited.

Kaitlyn Bosshardt, a social worker at Partnership Health Center in Missoula, counts letters about Medicaid that the state’s health department sent to clinic patients who don’t have a steady address. (Katheryn Houghton/KFF Health News)Partnership Health is one of roughly 1,400 health centers nationwide that receive federal funding to serve patients based on what they can afford — meaning even those who lose Medicaid can receive care. But organizations representing health centers have said if too many patients lose the coverage, some clinics won’t be able to fill the financial hole.

The other problem is that these clinics generally don’t provide specialty care.

One day in June, as temperatures hovered around 90,  Pugh visited Watershed Navigation Center, a refuge run by Partnership for people without steady housing to have a meal or see a doctor. His doctor, Atarah Sidey, told Pugh that the neurology clinic that managed his seizures had dismissed him from their care after he missed three appointments.

She referred Pugh to the other neurologist in town and talked about trying to find treatment for his addiction.

“It’s just that if I don’t make the effort at changing, it ain’t gonna happen and I’m gonna end up found on the side of the road somewhere,” Pugh told Sidey.

“You got this, though, Tywon,” she responded as Pugh nodded his head. “You can do this.”

Pugh has connected with a social worker for help keeping his Medicaid. By late July, he was waiting for space to open at a Missoula addiction treatment center and waiting on responses from two job applications.

In the hard moments, Pugh imagines his wife telling him to stay calm, that things will get better.

“I just don’t wanna lose hope in the meantime,” he 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.This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

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In this “How Would You Fix It?” interview, Julie Rovner, KFF Health News’ chief Washington correspondent and host of the What the Health? podcast, sat down with Sen. Andy Kim, a New Jersey Democrat, to discuss his proposal to grant all kids access to health coverage.

Kim, who serves on the Senate Health, Education, Labor and Pensions Committee, said it is “a real dereliction of our duty that we have not found a way to be able to ensure that every child is able to go see a doctor when they need to without breaking the bank.”

Under the senator’s proposal, children would be automatically enrolled at birth in the public program, which he has dubbed MediKids. Parents would have the option to opt their kids out, though they could reenroll them at any time until age 26, Kim told Rovner.

“You want to make sure that all of these kids are able to get the care that they need as their bodies are and their brains are developing and that you don’t see the kind of withdrawal of or restriction of care that could have real consequences down the road,” he said.

Kim said offering comprehensive, universal coverage to American children would help them avoid chronic conditions in adulthood, in addition to providing broader societal benefits, such as a healthier workforce.

He added that he hopes his idea could gain traction should Democrats claim a majority in Congress in the midterm elections, as well as foster an important discussion about healthcare in the 2028 presidential race.

An abbreviated version of this interview aired Aug. 6 during Episode 458 of What the Health? From KFF Health News: “The Return of ‘Medicare for All.’”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

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BALTIMORE — In March in a McDonald’s parking lot off a busy street, mental health clinician Michala Williams met a 38-year-old woman in a car.

“So, you called the police for help?” Williams asked the woman, who was sobbing uncontrollably and said she sometimes thinks about harming herself.

She told Williams she has children ranging from age 2 to 22, she was dealing with health issues, and that her fiancé had recently been jailed. She felt so overwhelmed she couldn’t eat.

The woman, who asked not to be named so that she could freely discuss her mental health, explained she’d tried to get help the previous month by driving to the hospital but got pulled over on the way because her car registration had expired.

“I don’t care if I get pulled over,” she said. “But I was saying, ‘I don’t know what to do. I just want to go to the hospital.’”

The officer arrested her for acting erratically, so instead of going to the hospital she went to jail.

“I had to sit inside of a cold cell. I couldn’t use the bathroom or anything,” the woman said.

On the day she met Williams, she’d decided to call 911. The dispatcher recognized the woman didn’t need a police response but instead needed one of Baltimore’s mobile crisis teams, which send a clinician and a peer counselor to meet people in mental health distress.

By the end of an hourlong conversation, Williams set the woman up with referrals to a psychiatrist, a therapist, legal help, and a case manager to determine if her child with autism was eligible for government services.

“She’s been through a lot of trauma, and no one is going to deny that,” Williams said. “But I now have to take all of that and decide, ‘OK, here’s steps 1, 2, and 3,’ because we got to find a little bit of sliver of something to give her some hope that there’s help out here.”

For years, the mobile crisis teams, which are overseen by Behavioral Health System Baltimore, a nonprofit that acts as the city’s mental health department, have diverted calls from police to mental health professionals. However, the units have a limited scope, focused on people in mental health crises.

Now Baltimore is tapping into some of the roughly $400 million it has received from opioid-related legal settlements to build out a broader service to operate around the clock and respond to other kinds of crises when police aren’t needed.

Baltimore logged 1.68 million calls to 911 in 2024, but tens of thousands of them didn’t require traditional emergency services, like police, firefighters, or EMTs, according to Tahir Duckett, an expert in community safety at Georgetown Law.

Instead, the calls were about, for example, a homeless person who fell asleep in a store, a person who seemed confused in a public park, and someone who was yelling at passersby on the street.

Such calls “don’t require a badge, a gun, and handcuffs to resolve,” Duckett said.

Often those people end up in jail instead of getting the help they need, he said. A study recently found that when a non-law enforcement team responded to 911 calls in Durham, North Carolina, it resulted in fewer arrests than when police responded — especially for callers who were Black, men, or ages 25-39. Police responses can also lead to trauma for that person or a less satisfactory outcome than another community service response would produce, Duckett said. The idea behind the Baltimore mobile crisis teams — and the new service — is to find out what people in crisis may need and how to connect them to those resources instead of arresting them.

From 2021 to 2025, Baltimore’s homicide rate decreased by 60%, setting records for the drop in violence. But at the same time, drug overdoses made national records, as about 1,000 people here died of an overdose each year from 2020 to 2023.

In 2018, Baltimore opted out of a global settlement that other jurisdictions made with opioid makers and distributors and instead sued them independently. As the opioid-related lawsuits were settled, city officials decided that the settlement awards it receives must be spent on drug-related harms — or on services that help prevent addiction, such as housing support, healthcare, and education.

One new program seeks to directly address overdoses by placing boxes of the overdose reversal drug naloxone at every subway stop. Expanding 911 services is part of a larger strategy to beef up city services, with $15 million in settlement funds allocated so far, according to Sara Whaley, Baltimore’s director of overdose response. Whaley hopes the expansion will help the city think differently about how it responds to residents in crisis — regardless of why they’re calling 911.

She views the calls as an opportunity to help solve a problem rather than be punitive. “What are the wraparound services and support that can help prevent them from being involved in this, in that emergency system?” she said.

For example, the person falling asleep in a store may need connection to community housing. The goal is to reduce violence, get people proper resources, and avoid the cycle of incarcerating people dealing with poverty, addiction, and mental health.

Rebecca Neusteter, executive director of the Health Lab at the University of Chicago, studies the impacts of services like these. She said they offer peace of mind for callers that “they’re going to be met with the right response at the right time.”

“We also see responders themselves feeling like they have a better toolbox in their ability to pursue actual resolution to these calls,” she said.

To expand its system, Baltimore looked to cities — including Durham — that have adopted similar models to reroute callers who don’t need emergency responders.

Durham’s diversion program is called the Holistic Empathetic Assistance Response Team, or HEART. The program estimates it has diverted more than 12,000 calls in four years. It said police backup was needed for only 0.02% of those calls and that response times have improved for all types of 911 calls.

Durham has collected descriptions of the HEART calls, showing that nonpolice responders in Durham have helped with everything from finding housing for a woman fleeing domestic violence to setting up medical appointments for a homeless veteran.

In one case, a hotel manager called 911 asking for help finding a blind man housing for the night, since the hotel didn’t have accessible rooms available. The HEART responders booked him a room and the next day provided a ride to meet with an organization that could help secure housing.

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

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

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AMHERST, Mass. — For the last 30 years, whenever pediatrician John Snyder wanted to find the most up-to-date research on treating young patients, he would turn to the Centers for Disease Control and Prevention.

If he wanted to learn more about an outbreak of measles or hantavirus, he would pore over the weekly CDC report that came by email. If a patient’s family was traveling to Africa or Asia, he would check the latest CDC vaccine recommendations for overseas travel. And if a family was worried about potential side effects from a shot, he could always send them to the CDC’s website to bolster his argument to get the immunization.

Public trust in the CDC has hit bumps in the road during infectious disease outbreaks, but for medical professionals, Snyder said, “the CDC used to be, worldwide, the most trusted source of information pertaining to public health and infectious disease.”

Yet even doctors began losing trust, Snyder said, after Donald Trump was elected president again. Trump quickly tapped longtime anti-vaccine activist Robert F. Kennedy Jr. as his nominee to lead the Department of Health and Human Services, which oversees the CDC.

Within months of his confirmation as secretary, Kennedy had dismissed every member of the CDC’s vaccine advisory board and replaced them with new appointees, some of them prominent vaccine skeptics.

“It turned into a completely unreputable source of information,” Snyder said.

This rupture of scientific trust in the CDC has put many pediatricians like Snyder in a bind, as they no longer turn to the country’s preeminent public health agency and instead search for ways to fill the information gap. Some doctors are launching their own vaccine education efforts, sometimes in collaboration with local public health departments.

On Jan. 5, the CDC removed some vaccines from the recommended vaccine schedule for all children — against the advice of major medical groups like the American Academy of Pediatrics. The number of recommended vaccines shrank as the agency dropped rotavirus, covid-19, influenza, hepatitis A, hepatitis B, and meningococcal disease from the list. The agency did not respond to a request for comment for this article.

In March, after medical groups sued, a federal judge ordered the Trump administration to revert to the previous guidelines. The administration has appealed the judge’s decision.

The storeroom of childhood vaccines at Amherst Pediatrics. (Karen Brown/New England Public Media)The back-and-forth “creates a whole bunch of confusion in the public,” Snyder said. “And it’s very confusing even for healthcare providers.”

So he’s trying to be clear to patients about what the evidence shows, even if that means going against the federal government. His practice, Amherst Pediatrics, changed its website to say: “The CDC is no longer considered to be a reliable or legitimate source of information.”

“It’s shocking that we have to say that,” Snyder said. Instead, the site directs families to get information from their own doctor, the state of Massachusetts, or nongovernmental medical organizations including the AAP.

In the exam room, Snyder is having more tense conversations with families. He said some parents are explicit that they want to hew to what the CDC recommends. “Even if they don’t say that, we have definitely seen increasing hesitancy and questions,” he said. “All of that interferes with us protecting children.”

On a spring afternoon, several of Snyder’s young patients came into Amherst Pediatrics for routine visits.

“Let’s talk about vaccines,” Snyder said to one mother, Tenzin Dekey, who was there with her 1-year-old. Snyder explained that her son was due for the MMR vaccine, which protects against measles, mumps, and rubella, in addition to the chickenpox, hepatitis A, and flu vaccines.

“So that’s four shots, two in each leg,” he said, as he handed Dekey CDC information sheets about the vaccines. She glanced at them and agreed to the shots.

Pediatrician John Snyder gives vaccine information to Tenzin Dekey, who had brought her 1-year-old son to Amherst Pediatrics for an annual exam. She accepted the vaccines Snyder recommended. (Karen Brown/New England Public Media)Ironically, the information sheets are stamped with the CDC’s logo — as required by law — even though Amherst Pediatrics has explicitly directed patients away from the CDC. Snyder said he hates that disconnect.

“This has been a source of heated discussion,” he said. “How can we be saying, ‘Do not trust the CDC when it comes to vaccines,’ yet here is the information we’re giving our own patients when they’re in the office about vaccines?”

Another mother brought her 14-year-old son for his annual physical. She asked to be identified by only her first name, Melissa, so she could freely discuss her family’s private health issues.

Snyder recommended the HPV vaccine, which helps prevent some cancers. Although Melissa had refused the HPV vaccine in a previous visit, this time she left the decision up to her son. He agreed to it. But for other vaccines, she wouldn’t budge.

“I’m a hard ‘no’ on the covid,” she told Snyder.

“We could talk about that if you want,” he suggested.

“I don’t need to talk about it,” she replied.

After the appointment, Melissa said she just doesn’t know whom to trust anymore when it comes to vaccine safety. She used to get information from the CDC but no longer does.

“I worry that it’s been politicized a lot, and I don’t like politics,” she said. “Now I prefer to hear things from people, healthcare professionals.”

Such distrust and confusion inspired Snyder to join an independent vaccine information campaign, along with other pediatric practices and health departments in the Connecticut River Valley of Western Massachusetts.

The campaign’s website, which is promoted in Snyder’s waiting room, is called Valley Vax. It sidesteps the CDC and highlights advice from local doctors and national medical groups, including the AAP. Valley Vax bought ads on the sides of buses in Western Massachusetts to promote the site, with the faces and testimonials of local doctors including Snyder.

“We wanted something that felt familiar and appealing and that they might be more likely to trust,” said Kiko Malin, director of Amherst’s public health department, who coordinates the Valley Vax effort.

The independent health website Valley Vax is advertised on the sides of buses in Western Massachusetts. (Kiko Malin)She said the organizers decided not to criticize the CDC outright.

“Some information from the CDC is reasonable. Like they are doing a good job of tracking influenza-like illness rates in the country,” Malin said. “It’s important not to discount an organization completely.”

Still, she said it’s the first time she’s had to contradict health information from the CDC. “That’s not a comfortable place to be in at all,” she said.

Other health leaders are also banding together to get out evidence-based information. At the state level, California, Hawai‘i, Oregon, and Washington — frustrated with the CDC — operate the West Coast Health Alliance to “ensure the public has access to credible information.” And governors of 14 states and Guam set up the Governors Public Health Alliance in response to declining trust in federal health agencies.

Locally, some public health departments are partnering with community leaders to reach people who have stopped listening to government institutions but “do have strong connections within their faith community or do have strong connections within their neighborhood,” said Adriane Casalotti, a spokesperson for the National Association of County and City Health Officials.

Like Amherst, many local health departments now direct people to professional medical organizations instead of the CDC, Casalotti said, because advice from those groups may change slightly as the science evolves, but it’s unlikely to change with each lawsuit against the government.

This article is from a partnership that includes New England Public Media, NPR, and KFF Health News.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

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When Alyne Diamond fell off a horse in August 2023 and broke her back, her employer-based health plan through UnitedHealthcare covered her emergency care in Aspen, Colorado. It also covered related pain management and physical therapy after she returned home to New York City. The bills totaled more than $100,000.

The real estate lawyer, now 67, was eligible for Medicare at the time but hadn’t enrolled. Since she was still working, she thought her employer health insurance plan would cover her.

That misunderstanding has had financial repercussions that she continues to deal with today.

More than a year after her riding accident, Diamond was back at the emergency room after she tripped on a step while entering a New York restaurant. Her face covered in blood, Diamond was examined by staff, who did multiple CT scans. The bill for that care: $12,000.

This time, though, the insurance coverage wasn’t routine. Nearly all her claims were denied.

Diamond was caught in a fairly common coverage snag: People who have group health insurance when they become eligible for Medicare sometimes find themselves on the hook for their medical bills because their group plan stops paying.

Diamond contacted several people at UnitedHealthcare before she found out why the insurer refused to pay her claims.

When Diamond turned 65 in 2022, Medicare — unbeknownst to her — became the “primary payer” for her claims, meaning the federal health program for older or disabled people was supposed to take the lead in covering her medical bills, before other insurers paid anything. (As secondary payer, Diamond’s employer policy picked up 20% of what Medicare would have paid.)

Had she signed up for the government insurance plan when she turned 65, Diamond could have avoided a financially perilous situation that left her unexpectedly responsible for the medical costs she incurred during that time.

She began to understand what had happened as she made inquiries about the denied claims.

Diamond said she was told that UnitedHealthcare audited her claims last year and determined it had been improperly paying for her care, perhaps because her pricey medical claims after her fall from the horse raised a red flag.

The insurer not only stopped paying current claims but also moved to claw back tens of thousands of dollars it had paid to providers in the two years since she turned 65. Some of those providers are now seeking payment from her.

“It’s horrifying,” she said. “For about two months I was devastated. I thought, ‘Where am I going to get the money to pay all these people? There goes my retirement.’”

The mistake has already cost her $25,000 and may cost her much more if providers continue to bill her for amounts that UnitedHealthcare has clawed back for care she received before signing up for Medicare in February.

A UnitedHealthcare spokesperson declined to provide an on-the-record statement, citing safety concerns.

Patient advocates say they frequently hear from people who, like Diamond, thought they didn’t need to sign up for Medicare upon turning 65 because they had group health coverage.

That assumption is generally correct if they or their spouse is working at a company with at least 20 employees. In that case, employer coverage is considered primary and they can delay signing up for Medicare as long as they or their spouse continues to be employed there.

But if someone has employer coverage through a company with fewer than 20 workers, Medicare generally becomes the primary payer when they turn 65. The real estate law firm at which Diamond is a partner has a handful of employees.

Similarly, if someone is older than 65 and has retiree health coverage or has left their job and opted to continue their employer coverage under the Consolidated Omnibus Budget Reconciliation Act, also known as COBRA, Medicare pays first. The issue can also arise for people who are younger than 65 if they are eligible for Medicare because of a disability. In those instances, Medicare pays first if they or their family member works at a company with fewer than 100 employees.

If people in these groups don’t sign up for Medicare when they become eligible, they can find themselves responsible for all their medical bills for years. (They may also owe a penalty for late enrollment in the Medicare program.)

“It’s very alarming and there’s no current fix to the situation,” said Fred Riccardi, president of the New York-based Medicare Rights Center, a national patient advocacy organization.

The Centers for Medicare & Medicaid Services did not respond to a request for comment.

Mark Scherzer, a lawyer in Germantown, New York, who helps people with insurance problems, and who advised Diamond, said he gets calls a couple of times a month from people who face this issue.

“What I see constantly now is that insurers go back and they claw back the money from the doctor and the doctor then claws the money back from the patient,” he said.

Costly claims may trigger an insurer to examine someone’s coverage.

Those big claims “seem to get on the insurer’s radar,” said Casey Schwarz, senior counsel for education and federal policy at the Medicare Rights Center.

UnitedHealthcare has recouped over $50,000 in medical bills from some of the providers who treated Diamond in New York after her riding accident. She’s paid them about $25,000 so far. Some have agreed to let her pay the amount Medicare would have paid.

But there may be more bills to come. Under New York law, health plans have two years after claims are paid to claw back payments from providers, and providers have three years to sue patients for medical debt. So, while there is still time for Diamond to be billed, the clock will eventually run out.

Diamond plans to sue the broker who manages her company’s health plan and other benefits for negligence.

“The Medicare secondary payment rules basically say that if you didn’t sign up because you didn’t know Medicare was supposed to be primary, that’s on you,” said Melanie Lambert, senior Medicare advocate at the Center for Medicare Advocacy in Connecticut.

Lambert said she has seen the issue “many, many times.” In some instances, if a beneficiary can demonstrate they were misled by an employer or a federal employee, they may qualify for relief or a special enrollment period, she said.

In a 2023 letter to the acting secretary of the Department of Labor, the National Association of Insurance Commissioners advocated applying a “commonsense rule to COBRA plans, individual health insurance, and other coverage sources: those entitled to Medicare Part B but not enrolled in it should not lose benefits they pay for from a non-Medicare coverage source.”

The Department of Labor didn’t respond to a request for comment.

In earlier times, people started collecting Social Security benefits then automatically got Medicare when they turned 65.

Now, enrolling in Medicare is more complicated for many people, said Tricia Neuman, a senior vice president and the executive director of the Program on Medicare Policy at KFF, a health information nonprofit that includes KFF Health News.

“As more people are delaying going on Social Security and delaying going on Medicare, there’s more opportunities for people to make mistakes, and those mistakes are costly,” Neuman said.

Coverage experts say there are no clear requirements for insurers, employers, or the federal government to notify people about how the payment rules governing coordination of benefits between health plans may change when they become eligible for Medicare.

The information appears in a chart in the government’s “Medicare & You” handbook, if someone knows to look for it. But it is not easy to find.

A straightforward fix could solve many of the problems people face in this area, Scherzer said. Since every health plan knows its enrollees’ ages, why not require them to notify people approaching 65 of possible benefit coordination issues with Medicare? “It’s so simple and such a no-brainer.”

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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On Fridays, Stephanie Johnson has a busy schedule, driving her navy-blue Jeep from one patient’s home to the next, seeing eight in all. Pregnant with her second child, she schleps a backpack instead of a traditional black bag to carry a laptop and essential medical supplies — stethoscope, blood pressure cuff, and pulse oximeter.

Forget a lunch break; she often eats a sandwich or some nuts as she heads to her next patient visit.

On a gloomy Friday in January, Johnson, a nurse practitioner who treats older adults, had a hospice consult with Ellen, a patient in her 90s in declining health. To protect Ellen’s identity, KFF Health News is not using her last name.

“Hello. How are you feeling?” Johnson asked as she entered Ellen’s bedroom and inquired about her pain. The blinds were drawn. Ellen was in a wheelchair, wearing a white sweater, gray sweatpants, and fuzzy socks. A headband was tied around her white hair. As usual, the TV was playing loudly in the background.

“It’s fine, except this cough I’ve had since junior high,” Ellen said.

Ellen had been diagnosed with vascular dementia, peripheral vascular disease, and Type 2 diabetes. Last fall, doctors made the difficult decision to operate on her foot. Before the surgery, Ellen was always colorful, wearing purple, yellow, blue, pink, and chunky necklaces. She enjoyed talking with the half dozen other residents at her adult family home in Washington state. She had a hearty appetite that brought her to the breakfast table early. But lately, her enthusiasm for meals and socializing had waned.

Johnson got down to eye level with Ellen to examine her, assessing her joints and range of motion, checking her blood pressure, and listening to her heart and lungs.

Carefully, Johnson removed the bandage to examine Ellen’s toes. Her lower legs were red but cold to the touch, which indicated her condition wasn’t improving. Ellen’s two younger sisters had power of attorney for her and made it clear that, above all, they wanted her to be comfortable. Now, Johnson thought it was time to have that difficult conversation with them about Ellen’s prognosis, recommending her for hospice.

“Our patient isn’t just the older adult,” Johnson said. “It’s also often the family member or the person helping to manage them.”

Nurse practitioners are having those conversations more and more as their patient base trends older. They are increasingly filling a gap that is expected to widen as the senior population explodes and the number of geriatricians declines. The Health Resources and Services Administration projects a 50% increase in demand for geriatricians from 2018 to 2030, when the entire baby boom generation will be older than 65. By then, hundreds of geriatricians are expected to retire or leave the specialty, reducing their number to fewer than 7,600, with relatively few young doctors joining the field.

That means many older adults will be relying on other primary care physicians, who already can’t keep up with demand, and nurse practitioners, whose ranks are booming. The number of nurse practitioners specializing in geriatrics has more than tripled since 2010, increasing the availability of care to the current population of seniors, a recent study in JAMA Network Open found.

According to a 2024 survey, of the roughly 431,000 licensed nurse practitioners, 15% are, like Johnson, certified to treat older adults.

Johnson and her husband, Dustin, operate an NP-led private practice in greater Seattle, Washington, a state where she can practice independently. She and her team, which includes five additional nurse practitioners, each try to see about 10 patients a day, visiting each one every five to six weeks. Visits typically last 30 minutes to an hour, depending on the case.

“There are so many housebound older adults, and we’re barely reaching them,” Johnson said. “For those still in their private homes, there’s such a huge need.”

Laura Wagner, a professor of nursing and community health systems at the University of California-San Francisco, stressed that nurse practitioners are not trying to replace doctors; they’re trying to meet patients’ needs, wherever they may be.

“One of the things I’m most proud of is the role of nurse practitioners,” she said. “We step into places where other providers may not, and geriatrics is a prime example of that.”

Practice Limits

Nurse practitioners are registered nurses with advanced training that enables them to diagnose diseases, analyze diagnostic tests, and prescribe medicine. Their growth has bolstered primary care, and, like doctors, they can specialize in particular branches of medicine. Johnson, for example, has advanced training in gerontology.

“If we have a geriatrician shortage, then hiring more nurse practitioners trained in geriatrics is an ideal solution,” Wagner said, “but there are a lot of barriers in place.”

In 27 states and Washington, D.C., nurse practitioners can practice independently. But in the rest of the country, they need to have a collaborative agreement with or be under the supervision of another health care provider to provide care to older adults. Medicare generally reimburses for nurse practitioner services at 85% of the amount it pays physicians.

Last year, in more than 40 states, the American Medical Association and its partners lobbied against what they see as “scope creep” in the expanded roles of nurse practitioners and other health workers. The AMA points out that doctors must have more schooling and significantly more clinical experience than nurse practitioners. While the AMA says physician-led teams keep costs lower, a study published in 2020 in Health Services Research found similar patient outcomes and lower costs for nurse practitioner patients. Other studies, including one published in 2023 in the journal Medical Care Research and Review, have found health care models including nurse practitioners had better outcomes for patients with multiple chronic conditions than teams without an NP.

Five states have granted NPs full practice authority since 2021, with Utah the most recent state to remove physician supervision requirements, in 2023. In March, however, Mississippi House Bill 849, which would have increased NP independence, failed. Meanwhile, 30 Texas physicians rallied to tamp down full-scope efforts in Austin.

“I would fully disagree that we’re invading their scope of practice and shouldn’t have full scope of our own,” Johnson said.

She has worked under the supervision of physicians in Pennsylvania and Washington state but started seeing patients at her own practice in 2021. Like many nurse practitioners, she sees her patients in their homes. The first thing she does when she gets a new patient is manage their prescriptions, getting rid of unnecessary medications, especially those with harsh side effects.

She works with the patient and a family member who often has power of attorney. She keeps them informed of subtle changes, such as whether a person was verbal and eating and whether their medical conditions have changed.

While there is some overlap in expertise between geriatricians and nurse practitioners, there are areas where nurses typically excel, said Elizabeth White, an assistant professor of health services, policy, and practice at Brown University.

“We tend to be a little stronger in care coordination, family and patient education, and integrating care and social and medical needs. That’s very much in the nursing domain,” she said.

That care coordination will become even more critical as the U.S. ages. Today, about 18% of the U.S. population is 65 or over. In the next 30 years, the share of seniors is expected to reach 23%, as medical and technological advances enable people to live longer.

Patient and Family

In an office next to Ellen’s bedroom, Johnson called Ellen’s younger sister Margaret Watt to recommend that Ellen enter hospice care. Johnson told her that Ellen had developed pneumonia and her body wasn’t coping.

Watt appreciated that Johnson had kept the family apprised of Ellen’s condition for several years, saying she was a good communicator.

“She was accurate,” Watt said. “What she said would happen, happened.”

A month after the consult, Ellen died peacefully in her sleep.

“I do feel sadness,” Johnson said, “but there’s also a sense of relief that I’ve been with her through her suffering to try to alleviate it, and I’ve helped her meet her and her family’s priorities in that time.”

Jariel Arvin is a reporter with the Investigative Reporting Program at the University of California-Berkeley Graduate School of Journalism. He reported this article through a grant from The SCAN Foundation.

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

USE OUR CONTENTThis story can be republished for free (details).

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About 3 in 10 adults reported not taking their medicines as prescribed at some point between July 2022 and July 2023 because of the cost, according to a KFF survey. So, this year, “An Arm and a Leg” asked listeners: What strategies have you used when you’ve been struck by pharmacy sticker shock?

Dozens of listeners responded with their stories, including Bob, who is being identified only by his first name to guard his family’s privacy and whose daughter has epilepsy. When Bob changed jobs, the price tag for his daughter’s medication went through the roof. In this first installment of a two-part series, “An Arm and a Leg” shares lessons from Bob’s experience navigating a maze of pharmacies and insurance companies to get his daughter the medicine she needs.

Dan Weissmann@danweissmannHost 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.CreditsEmily PisacretaProducerClaire DavenportProducerAdam RaymondaAudio wizardEllen WeissEditorClick to open the TranscriptTranscript: The Prescription Drug Playbook, Part INote: “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.

When I tell friends that we’ve been working on a series about how to pay less for prescription drugs, I find myself telling them about a guy named Cole Schmidtknecht.

In January of last year, Cole went to a Walgreens in Appleton, Wisconsin, to get refills on the medication he used to control his asthma.

He’d been taking it for years, and he expected to pay about seventy bucks.

But — this is all according to a lawsuit filed by Cole’s folks– the pharmacy said his insurance didn’t cover his medicine anymore. He’d have to pay more than 500 dollars.

He left without it.

A few days later, he had a massive asthma attack. He died after a few days on life support. He was 22 years old.

In their lawsuit, Cole’s folks say the pharmacist at Walgreens could’ve told him right then and there about comparable drugs his insurance would’ve paid for.

This is the kind of information we all need, all deserve.

In surveys, a quarter of Americans say they’ve skipped taking meds in the past 12 months because of cost.

And maybe we can put a little dent in that.

Because there are actually a lot of things to know, and a lot of things– a lot of strategies we can try when it looks like our medicine is gonna cost an arm and a leg.

Over the last few months, you’ve actually been helping us learn about more of these strategies, and here we’re gonna start tying those lessons together.

Back in February, we asked you, our listeners, to tell us how you’ve managed when your prescriptions got really expensive.

And we heard back from a LOT of you.

Person 1: We went to go pick up the prescription and we were like, holy moly, that is so expensive.

Person 2: We’ve been given estimates of $30,000 a dose

Person 3: The pharmacist would burst out laughing every time I showed up

Dan: And … you told us what you did next. The strategies you learned for fighting back, and sometimes winning.

A lot of those strategies, we knew about. Some, we were like, whoa, that’s a new one on us!

I mean, with all of this, there’s no guarantee that your particular problem has a good solution.

Our whole system sucks. These are patches, workarounds.

Cole’s dad– he now works full time trying to change the whole system of how we get charged for meds. Which is a must– and is gonna be a long haul.

But in the meantime, these patches and workarounds — honestly, they can really help a lot of people.

So here’s what we’re gonna do.

We’re gonna break down what we’ve learned into chunks you can digest, and share. We’re gonna take TWO episodes of this show to do it.

And we’re NOT expecting you to take out a pen and paper: We’re gonna share everything in writing, in our First Aid Kit newsletter. Including stuff that doesn’t fit on the podcast.

It’ll take four installments. I’m telling you, there’s a lot.

Meanwhile, we’re starting here with one guy’s story– a listener named Bob.

Bob’s journey is going to help us show you — well, the journey. How the trial and error works. The obstacles.

And we’ll show you the strategies Bob worked to get through those obstacles. Including a tool he developed, that we’re gonna share with you.

And I’ve got some help telling Bob’s story. Our producer Claire Davenport did most of the reporting for this episode. Hey, Claire!

Claire: Hi, Dan!

Dan: You’re gonna tell us Bob’s story, and then at some points, we’ll zoom out — like tour guides, pointing out the big lessons

Claire: Yep! I’m super excited to get into it.

Dan: Let’s go.

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 the job we’ve chosen on this show is to take one of the most enraging, terrifying, depressing parts of American life, and bring you something entertaining, empowering, and useful.

Okay Claire, where should we start with Bob’s story?

Claire: First, let’s meet Bob. He’s got a lot going on…

Bob: Between me and my wife, we have five kids and uh, three dogs, and two cats and two lizards.

Claire: Did you ever anticipate you’d be a dad to so many, Bob: Nobody plans to have many kids, Claire.

Claire: By the way, Bob asked us just to use his first name for privacy reasons. But we’ve checked out his story — he sent us lots of documentation.

Bob’s journey here begins in 2019 — the first day of high school for his daughter, Mary.

After she got home, he wanted to hear how it went, so he called her.

Bob: We were talking and, I would say she’s being a little spacey, but, uh, talking to a 14-year-old on a cell phone, right?

And, and I’ll never forget this, she, we were talking and all of a sudden she said, the ceiling looks so funny.

And then, um, and then she was sort of gone.

Claire: At first, he assumed Mary had just set the phone down — maybe to talk with one of her sisters.

Bob: I text her mom and say, Hey, I was talking to our oldest daughter, and, uh, she just sort of disappeared now she’s not answering the phone. Can you go check on her?

And I still get even choked up talking about this. But, I get a text back in about two minutes saying she’s unconscious.

Claire: They end up calling an ambulance. Bob is scared.

Bob: All kinds of thoughts were running through my mind in terms of what could possibly have happened here. Epilepsy was not one of them.

Claire: Epilepsy. It’s a condition that causes seizures. And Mary was having one while her dad was on the phone with her.

Mary and her folks worked with a pediatric neurologist. They started trying out different medications and dosages.

Bob: We were told, we’re going to figure out what the right medications are for her. This is gonna be a process.

Claire: And it was. It took years of trial and error: they had to experiment with different drug combinations.

Finally they landed on the right mix. That mix included a drug called Clobazam. Bob: And that seemed to be the magic bullet

Claire: A magic bullet with a reasonable price tag.

Bob: the three drugs she was on were well under a hundred dollars for all three of them together

and she went over a year without a seizure.

(beat)

Bob: And then I changed jobs.

Claire: Which had an unexpected consequence. As Bob learned when it was time to refill Mary’s prescription for Clobazam.

Bob was used to paying around 15 dollars.

Bob: This time the pharmacist comes out and says, Hey, your, your Clobazam is gonna be $500.

Claire: Ok, so…Dan, let’s take a step back. Bob changed jobs, and suddenly Mary’s Clobazam is $500. Because…

Dan: Bob’s new job meant… a new insurance plan for the family. And…

Claire: Every insurance plan has its own list of how much you pay for which drugs. And which drugs they don’t cover at all. That list is called “the formulary.”

Dan: That list, that formulary, is based in part on business deals that plans and drug-makers hash out behind closed doors.

Claire: So when you change jobs, change insurance: the difference between what’s on one formulary and what’s on the next: It can be…

Dan: unpredictable at best.

And even if you don’t change jobs, your job may change your insurance plan. That happens a lot.

Claire: And even if your insurance plan doesn’t change, that plan’s formulary can change from year to year.

Dan: So, Claire, this seems like the first big lesson from Bob’s story — the first big obstacle: The deal can change on you. And MAYBE, in this new deal, your insurance offers another drug they say is just as good.

But it may not be just as good for YOU. That’s a thing.

Claire: And it was definitely a thing for Bob and his daughter Mary. Remember, they had spent YEARS of trial and error, finding the perfect regimen.

Just switching to whatever random thing the insurance company approves, that’s not on the table.

So first, Bob thinks, hey maybe there was just some kind of mistake here. New insurance company, right? Maybe the pharmacy got confused. Bob calls his insurance just to ask, and they’re like:

Bob: Oh, well that medication, , is only covered for a certain type of, of epilepsy

Claire: Which isn’t the type they think Mary has. They’re not gonna cover it. So, now we have arrived at the point where Bob busts out his first big strategy: Haggling with his insurance. They’ve said “no,” but that doesn’t mean he has to accept this as their final answer.

Dan: Yep, we heard from so many people — have heard over the years: This is a whole dance, a whole fight.

Claire: Yep, and Bob’s gonna take us through it. In fact, in this very same phone call where his insurance company said they wouldn’t cover Mary’s Clobazam, they basically invited him to this dance. They said:

Bob: Well, there’s a prior authorization that can be filled out. We’ll send that to your doctor.

Dan: There’s a prior authorization for that! We’ll send that to your doctor!” The way Bob says that, it sounds like the insurance person was so cheerful. Making things sound so easy.

But prior authorization…

Claire: That’s a hurdle, a hoop for Bob — and Mary’s doctor — to jump through.

Dan: This will be familiar to a lot of folks already, but: Prior authorization… PRIOR:

Claire: Before the insurance company will pay for Mary’s Clobazam, Dan: They have to AUTHORIZE it.

Claire: her doctor has to make a case that she needs this particular treatment — and the insurance company has to decide the argument is good enough.

Dan: We see it all the time.

Claire: Bob isn’t thrilled by this requirement.

Bob: Seems unnecessary. This is a, you know, board certified pediatric neurologist who’s been seeing this patient for years.

Claire: And who took her through a whole long trial-and-error process to find the right meds.

Dan: Because of Bob’s confidentiality, his insurance company said they couldn’t respond directly to his story — fair enough. But a lot of the time, Insurance companies say: Hey, we’re just discouraging waste with these prior authorizations! Sometimes doctors do just prescribe an expensive thing, when something cheaper would be just as good. Okay.

But a lot of patients say, like Bob would: My doctors and I had already DONE all this checking.

Claire: Bob gets form sent in, but now he’s got another problem. The insurance company needs time to evaluate the prior authorization. And Mary needs her drugs right now.

Bob: She starts to panic a little bit of like, Hey, I, I need my medication. If I miss a couple doses, I could have a seizure.

Dan: That’s a bad problem.

Claire: Luckily: Bob found a way to get Mary’s Clobazam for less than five hundred dollars a week. We’ll get into that a little later.

But for now, just to note: It’s lucky he found that workaround. Because when Bob calls to check on the prior authorization– PA for short– Well, here’s how he says the conversation went…

Bob: ‘Yes, we got the PA information. It was denied.’

‘It was denied? What, uh, why was it denied?’

‘Oh, well, again, it looks like it’s only approved for this one particular type of epilepsy.’

Claire: Which was just what they’d said before. Bob gets ready to appeal.

And he says this is getting to him. When we talked, he mentioned a lesson from this show:

Bob: I think you guys recommend this of like not losing your cool with the customer service people, in the insurance companies.

Dan: We do. Everybody says: It really helps.

Claire: And everybody knows. It’s not actually always possible. Here’s what happened the next time Bob calls his insurance.

Bob: They asked me, oh, how’s your daughter doing? And I just remember saying like, you don’t care how my daughter’s doing. She’s terrified. She’s gonna be walking to class and have a seizure because she doesn’t have the medication. So don’t give me this BS about how’s my daughter doing.

Dan: Bob seems like a pretty level-headed guy.

Also — we’ve kind of withheld this until now– but Claire, you told me Bob works in health care, so he knows a little more about this world than most of us do. Insurance, appeals.

He’s got the advantage, in terms of keeping his cool, of not being in totally foreign terrain.

Claire: Yep, and he says he recovered his cool pretty quickly.

Bob: I pulled back at when I realized what I was doing. Like this isn’t this person’s fault. They’re just probably reading a script.

Dan: But this is kind of the lesson here: No matter what kind of advantages you have, this stuff is so frustrating. Anybody can lose their cool. The key — and maybe we should do a whole show on this — is recovering. Because you’re gonna have to get up and go again.

Claire: Yeah, and we’re just getting to the most frustrating part. Dan: Right.

Claire: After more than a month– and two rounds of appeals– Bob says Mary’s Clobazam finally gets approved.

Dan: And this is the frustrating part because…

Claire: Insurance will cover it now. But they tell him his share is going to be $150. Remember, Bob said under his old insurance, it used to only cost $15.

Bob: So 10 times the price now, plus the price you know, of the other medications she’s on.

Dan: Yep. All this waiting, all this fighting, everything. And it’s ten times more than he used to pay under his old insurance.

Claire: It’s less bad– this insurance originally was gonna make him pay more than 500 bucks. But yeah. Not great.

Dan: But Claire: this is not the end of Bob’s story, right?

Claire: Not even close.

Bob: What this sparked us to do is to look at, well okay, if it’s not going to get approved, what are the other options?

Claire: We’ll get into those options– after the break.

Dan:This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering health issues in America. Their reporters win all kinds of awards every year. We are honored to work with them.

So, Bob has worked the strategy of Haggling With His Insurance. And he won. Kind of. Except that winning still leaves him paying ten times more than he used to.

Claire: Yes, and now he’s going to work a whole different strategy: Ignoring his insurance. Because there can be better deals elsewhere. Bob starts with GoodRx.

Dan: Lots of people know it — it’s a website where you tell them what drug you need, and they’ll show you deals — discounts — at local pharmacies.

Which does not always work. Saving 50 percent on a thousand dollar drug does not make it affordable. I know people who get mad when you mention it.

Claire: Bob says he got mad because of who recommended it to him: a rep from his insurance company.

Bob: Like you’re my insurance company. Why? You’re, that’s what I pay you for.

Claire: Right? he pays them premiums so he can pay less for health care, including medicine. But he didn’t write it off. And he says now, it was actually useful: even though he knew about GoodRx before, he wouldn’t have thought to go there.

Bob: like I almost, and this is gonna sound crazy, but I almost thought of GoodRx as like Medicaid. Like, I think I thought of it as like, oh, well that’s what you use if you don’t have insurance.

Dan: Interesting! And in one sense, he wasn’t wrong: When you use a GoodRx discount, you can’t use your insurance too. But it turns out, even when you have insurance, GoodRx can be worth looking at.

Claire: Yes, and here’s what makes Bob’s story stand out — the reason we wanted to really dig in. It’s what he did next. Because he didn’t just look at GoodRx. He started exploring a whole world of options. Actually, worlds.

One is the world of sites LIKE GoodRx.

Dan: Ooh, I’m googling “sites like GoodRx” — here’s SingleCare, RxSaver, BuzzRx…

Claire: Yep, and for any given drug, each of these sites may show you different prices. So now that he was looking at this world, he started mapping it.

Bob: I created this spreadsheet that had each of those options, the different medications and then the different pharmacies and where we could kind of get the best price for things.

Claire: And: Once Bob started looking at THIS outside-insurance world, started exploring others. Like Cost Plus Drugs.

Bob: And –What was really sort of eye-opening to me is they did so much better than our insurance company did.

Dan: We should really talk about Mark Cuban Cost Plus Drugs, to use its full name. It’s pretty different.

Claire: Right. The celebrity owner.

Dan: Mark Cuban is basically famous for being rich. Like he owns the Dallas Mavericks basketball team.

Claire: And he’s spent 15 years on the reality show Shark Tank. [THEME]

Dan: It’s like American Idol for startups. People pitch their business to investors who might offer to buy in, on camera.

TV announcer: Mark Cuban has just made the largest offer in Shark Tank history.

Mark Cuban: Lemme ask you a question. If I offered you $30 million for the company, would you take it?

Claire: All of that, but the celebrity factor isn’t really what makes Cost Plus different: The company buys meds direct from manufacturers, and adds 15 percent to their wholesale cost.

Dan: Plus shipping fees, and five bucks for “pharmacy labor”. Claire: Bob added CostPlus to his spreadsheet. And he liked what he saw. Bob: It’s very transparent and super low cost.

Claire: He asked Mary’s doctors to transfer two of Mary’s prescriptions.

Dan: But not all of them. Cost Plus doesn’t carry everything. For one thing, they mostly only carry generic drugs.

Claire: And — what matters in Bob’s case: they don’t carry controlled substances. Nobody sells them online because it’s illegal to ship them. And Mary’s Clobazam? It’s a type of controlled substance: They’re called Benzos.

Dan: Like Valium and Xanax.

Claire: So for Clobazam, the best price he can find is 85 bucks, using GoodRx at Walmart.

Dan: A LOT less than his insurance was gonna have him pay. go spreadsheet! Head to WalMart, use GoodRx there.

Claire: Just one thing: Mary’s off at college now, and there’s no Walmart right nearby. And Mary, doesn’t drive.

Bob: Well, she has epilepsy. She can’t have a driver’s license, so it’s uh, she can’t drive anywhere. Right? We had a Walmart near our house at home. I’m two and a half hours away from her.

Claire: And he says he made the drive.

Dan: Dad of the decade. For ALL of this. Bob fought down the insurance companies. He shopped around. He made the spreadsheets. And he made a bunch of round trips to his daughter’s college.

Claire: Yeah, Bob rules. But he’s not exactly happy about all of it.

Bob: I pay an insurance company every month outta my paycheck for prescription drug benefit that I don’t feel like I get, right? Like I’m having to go outside of that in order to get them the medications that are nothing special. Like, clobazam has been on the market since like the seventies.

Dan: Yeah, fair.

Claire: But he may be game to take the win on that Dad of the Decade award.

Bob: Would say I did a magnificent job of, you know, staying, staying calm, and hiding that stress from Mary

Mary: I assumed he was gonna figure it out. Um.. [laughs] Bob: Total confidence in me, right? [laughs]

Dan: That’s Mary?

Claire: That’s her.

Dan: OK, so let’s review these lessons: Yes, you can fight your insurance, but you may get a better deal going outside of it. All of which suck — this was a LOT of work, and not a total victory — but is better than NOT knowing any of this.

Claire: Yes. And this story ends up going full circle. Back to the first lesson. The deal can change on you. For worse. Or for better.

Bob changed jobs again recently — so, new insurance.

And actually, it’s good this time! Under Bob’s new insurance, Mary’s clobazam is … back to 15 dollars.

Which she learned when she went to pick it up recently.

Mary: I was like, this is amazing. Definitely a weight lifted off my chest when I saw a two digit number.

Dan: And speaking of how the deal can change on you… this reminds me: went looking at GoodRx recently, and saw a new price for Mary’s Clobazam there, too.

Claire: Yes. The lowest price on GoodRx is now: Thirty dollars, at a CVS she can walk to.

I showed the current GoodRx prices to Bob and Mary, and what struck Mary at first was this: how different the prices at different pharmacies were.

GoodRx said CVS had Clobazam for 30 dollars but…

Mary: It said Walgreens was like over $300.over. It was like 300 and then everything else is between 25 and 35, maybe 40, but I don’t understand that.

Dan: I KNOW! Man, I had this exact experience a few years ago. I was like, WHY ARE THESE SO DIFFERENT?

I ended up learning about companies called pharmacy benefit managers or PBMs. They’re the ones that actually decide which drugs our insurance covers, and how much we pay for them.

We did a WHOLE episode about them (it was SOO complicated, but I learned a huge amount)

Claire: So we are NOT gonna get into here, but we’ll leave a link in the show notes in case people want to nerd out.

Because today we’re just looking at how to get things to work better for YOU.

So: Mary was curious about the 300 Walgreens price from GoodRx. And by the way, she’s also furious with the whole system.

But here’s one thing she was filing away: She could now use GoodRx to get Clobazam for 30 dollars at CVS.

Mary: It was not like that a couple years ago. And it is reassuring to know, like, if I show up and it’s, you know, $150, there are places that would have a price I could actually afford.

Dan: Let’s take that glass half full and add a little bit to it. Because in addition to their story, Bob gave us one more thing: His spreadsheet. And we’ve been adding to it.

Claire: Yep. We’ve got a template you can download — it’s in the show notes for this episode, and it’s in our First Aid Kit newsletter. And in addition to GoodRx, and some similar sites, and CostPlus, we’re adding lines where you can log prices from a world Bob didn’t explore.

Dan: I mean, he’s just one guy.

Claire: So, one thing we’re adding: ordering from pharmacies outside the U.S.

Drug prices are lower basically everywhere else, and some pharmacies in Canada will ship to the U.S. To avoid shady internet stuff, a tool called Pharmacy Checker will steer you to ones that are above board.

Dan: Another addition: Manufacturer coupons. SOMETIMES, especially with brand-name drugs, pharma companies offer coupons that can make drugs affordable.

Claire: There are a lot of caveats with those too.

Dan: Oh man, tell me about it. But not right now. There are TOO MANY possible workarounds, too many caveats, for any one person to keep in mind. That’s why we are doing this across two episodes and FOUR installments of our First Aid Kit newsletter.

It’s all exhausting, and there’s no guarantees. But it’s all worth knowing. And with help from Bob, and a lot of listeners who chimed in, we are boiling things down and putting them in forms we hope you’ll find useful.

As always, DEFINITELY please let us know how the stuff we provide can be even better.

You can find the First Aid Kit newsletter at arm and a leg show dot com, slash first aid kit. New installments there every week. We’ll have a link wherever you’re listening to this.

And in our next episode, we’ll dive into some tips that really surprised us, from folks who do this kind of thing for a living.

Erika: I guess in my heart of hearts, I want everyone to be taken care of. Dan: For now, Claire: Thank you so much for bringing us Bob’s story. Claire: My pleasure!

Dan: And we’ll be back with the second episode in this series in a few weeks. Till then, take care of yourself.

This episode of An Arm and a Leg was produced by Claire Davenport with help from me, Dan Weissmann, and Emily Pisacreta. And our new intern: Welcome Lauren Gould! It was edited by Ellen Weiss.

Adam Raymonda is our audio wizard.

Our music is by Dave Weiner and Blue Dot Sessions.

Bea Bosco is our consulting director of operations.

Lynne Johnson is our operations manager.

An Arm and a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in-depth journalism about health issues in America — and a core program at KFF: an independent source of health policy research, polling, and journalism.

Zach Dyer is senior audio producer at KFF Health News. He’s editorial liaison to this show.

An Arm and a Leg is Distributed by KUOW — Seattle’s NPR station. And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor.

They allow us to accept tax-exempt donations. You can learn more about INN at INN.org.

Finally, thank you to everybody who supports this show financially. You can join in any time at arm and a leg show, dot com, slash: support.

Thanks! And thanks for listening.

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

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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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June 12

Sam Whitehead reads the week’s news: Inadequate communications infrastructure is harming the health of rural Americans, and ministroke symptoms may look mild but need medical treatment.

June 5

Katheryn Houghton reads the week’s news: More than 100 rural hospitals have stopped delivering babies since 2021, and the federal government failed to warn the public about a major E. coli outbreak.

May 29

Jackie Fortier reads the week’s news: New programs teach Black kids to swim competitively and help their parents learn too, and people in prison are often denied basic health care at the end of their lives.

May 22

Zach Dyer reads this week’s news: Federal funding cuts are gutting HIV prevention programs, and financial pressures are leading to the closure of clinics that provide abortion care even in states where it’s legal.

May 15

Sam Whitehead reads this week’s news: Using “elderspeak” with seniors can be harmful, and independent pharmacists worry tariffs could force them to close.

May 8

Jackie Fortiér reads this week’s news: CPR and defibrillator training can give people the skills to help others survive cardiac arrest, and doctors are using telehealth to help thousands of patients each month access abortion care in states where it’s banned.

May 1

Katheryn Houghton delivers the week’s news: A new survey finds that more Americans are hearing false claims about measles and the vaccine that prevents it, and changes to federal health funding have advocates worried the White House is deprioritizing fighting addiction.

April 24

Zach Dyer reads this week’s news: Concierge medicine could worsen the physician shortage in rural areas, and the Trump administration has canceled medical research grants that it says aren’t in line with its priorities.

April 17

Sam Whitehead reads this week’s news: Families that rely on home health aides could pay the price for the Trump administration’s anti-immigrant policies, and some local health departments are canceling scheduled services because the federal government is trying to take back health grants.

April 10

Jackie Fortiér reads this week’s news: The Trump administration is rolling back accommodations for people with disabilities, and a charity is about to wipe out $30 billion of medical debt, but that won’t stop Americans from accruing more.

April 3

Katheryn Houghton reads this week’s news: The Trump administration may stop using a “Housing First” approach to ending homelessness, and Medicaid rules can force people with disabilities not to work in order to keep services they need.

March 27

Zach Dyer delivers this week’s news: Federal regulators want to collect more data to figure out why some CT scans deliver much more radiation than others, and opposition to mRNA vaccines could end promising efforts to cure diseases including pancreatic cancer.

March 20

Jackie Fortiér reads this week’s news: Recent firings at the Centers for Disease Control and Prevention could make it harder to control infectious disease outbreaks, and hoarding disorder can be especially dangerous for older people.

March 13

Sam Whitehead reads this week’s news: Trump voters may favor government regulation to cut health care costs, and health workers are being trained on the law to deal with possible raids by Immigration and Customs Enforcement officers in health care settings.

March 6

Zach Dyer reads this week’s news: The current bird flu outbreak is gaining momentum despite mass culling of infected poultry, and the Trump administration is embracing the conservative policy playbook known as Project 2025.

Feb. 27

Katheryn Houghton reads this week’s news: Republicans in Congress are considering cuts to Medicaid, and the dietary supplement industry is hoping to cash in on RFK Jr.’s new role as head of the Department of Health and Human Services.

Feb. 20

Jackie Fortiér reads this week’s news: Some states are turning to laundromats to reach people who could qualify for programs including Medicaid and food assistance, and cross-border telehealth is helping Spanish-speaking farmworkers get care.

Feb. 13

Sam Whitehead reads this week’s news: Hospital systems are looking for ways to help people in the U.S. without legal status get care, and some schools say staffing shortages make it hard to meet the needs of students with diabetes who use continuous glucose monitors.

Feb. 6

Katheryn Houghton delivers this week’s news: Pediatricians believe a decline in childhood vaccination rates could drive a return of deadly vaccine-preventable diseases, and addiction experts say legalizing sports betting has downsides for health.

Jan. 30

Renu Rayasam delivers this week’s news: There are still no proven therapies for long covid despite more than $1 billion in federal funding, and some hospitals are assigning dogs to work alongside medical staff in hospitals to help them cope with burnout and stress.

Jan. 23

This week on the KFF Health News Minute: Stable housing is scarce for a rapidly increasing number of homeless seniors, and insurers sometimes deny coverage for prosthetic limbs by deeming them experimental or not medically necessary.

Jan. 16

This week on the KFF Health News Minute: AI tools in medicine might not save money, and credit agencies can no longer include medical debt on credit reports.

Jan. 9

This week on the KFF Health News Minute: Small interventions at the doctor’s office, such as removing a splinter, can be billed as surgeries, and billing problems with the Indian Health Service are leaving Native American communities with significantly higher medical debt than the national average.

Jan. 2

This week on the KFF Health News Minute: Hyperthermia deaths are rising, and millions of people could lose Medicaid if the incoming Republican-controlled Congress follows through on proposed cuts to federal funding.

The KFF Health News Minute is available every Thursday on CBS News Radio.

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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MIAMI — Josefina Muralles works a part-time overnight shift as a receptionist at a Miami Beach condominium so that during the day she can care for her three kids, her aging mother, and her brother, who is paralyzed.

She helps her mother feed, bathe, and give medicine to her adult brother, Rodrigo Muralles, who has epilepsy and became disabled after contracting covid-19 in 2020.

“He lives because we feed him and take care of his personal needs,” said Josefina Muralles, 41. “He doesn’t say, ‘I need this or that.’ He has forgotten everything.”

Though her husband works full time, the arrangement means their household income is just above the federal poverty line — too high to qualify for Florida’s Medicaid program but low enough to make Muralles and her husband eligible for subsidized health insurance through the Affordable Care Act marketplace, also known as Obamacare.

Next year, Muralles said, she and her husband may not be able to afford that health insurance coverage, which has paid for her prescription blood thinners, cholesterol medication, and two surgeries, including one to treat a genetic disorder.

Extra subsidies put in place during the pandemic — which reduced the premiums Muralles and her husband paid by more than half, to $30 a month — are in place only through Dec. 31. Without enhanced subsidies, Affordable Care Act insurance premiums would rise by more than 75% on average, with bills for people in some states more than doubling, according to estimates from KFF, a health information nonprofit that includes KFF Health News.

Florida and Texas would be hit especially hard, as they have more people enrolled in the marketplace than other states. Some of their congressional districts alone, especially in South Florida, have more people signed up for Obamacare than entire states.

Like many of the more than 24 million Americans enrolled in the insurance marketplace this year, Muralles was unaware that the enhanced subsidies are slated to expire. She said she cannot afford a premium hike because inflation has already eaten into her household’s budget.

“The rent is going up,” she said. “The water bill is going up.”

Low-income enrollees like the Muralles couple would see the biggest percentage increases in premiums if enhanced subsidies expire.

Middle-income enrollees who earn more than four times the federal poverty line would no longer be eligible for subsidies at all. Those middle-income enrollees (who earn at least $62,600 for a single person in 2025) are disproportionately older, self-employed, and living in rural areas.

Julio Fuentes, president of the Florida State Hispanic Chamber of Commerce, said many of his organization’s members are small business owners who rely on Obamacare for health coverage.

“It’s either this or nothing,” he said.

The Congressional Budget Office estimated that letting the enhanced subsidies expire would, by 2034, increase the number of people without health insurance by 4.2 million. In tandem with changes to Medicaid in the House of Representatives’ reconciliation bill and the Trump administration’s proposed rules for the marketplace, including toughening income verification and shortening enrollment periods, it would increase the number of uninsured people by 16 million over that time period.

A study by the Urban Institute, a nonprofit think tank, found that Hispanic and Black people would see greater coverage losses than other groups if the extra subsidies lapse.

Fuentes noted that about 5 million Hispanics are enrolled in the ACA marketplace, and that Donald Trump won the Hispanic vote in Florida in 2024. He hopes the president and congressional Republicans see extending the enhanced subsidies as a way to hold on to those voters.

“This is probably a good way, or a good start, to possibly grow that base even more,” he said.

Enrollment in the marketplace has grown faster since 2020 in the states won by Trump in 2024. A recent KFF survey found that 45% of Americans who buy their own health insurance identify as or lean Republican, including 3 in 10 who identify as Make America Great Again supporters. Smaller shares identify as Democrats or Democratic-leaning independents (35%) or do not lean toward either party (20%).

Kush Desai, a White House spokesperson, said the rules proposed by the Trump administration, combined with the provisions in the House-passed budget bill, would “strengthen the ACA marketplace.” He noted that the CBO projects the legislation would reduce premiums for some plans about 12% on average by 2034 — but out-of-pocket costs would rise or remain the same for most subsidized ACA consumers.

“Democrats know Americans broadly support ending waste, fraud, and abuse, as The One, Big, Beautiful Bill does, which is why they are desperately trying to change the conversation,” Desai said.

But Lauren Aronson, executive director of Keep Americans Covered, a group in Washington, D.C., representing health insurers, hospitals, physicians, and patient advocates, said it is critical to raise awareness about the likely impact of losing the enhanced subsidies, which are also known as advanced premium tax credits. She is encouraged that Democrats have proposed legislation to extend the enhanced tax credits, and that some Republican senators have voiced support.

What worries Aronson most is that the Republican-controlled Congress is more focused on extending tax cuts than enhanced subsidies, she said. The current bill extending the 2017 tax cuts would increase the federal deficit by about $2.4 trillion over the next decade, according to the CBO, while making the enhanced subsidies permanent would increase the deficit by $358 billion over roughly the same period.

“Congress is moving forward on a tax reconciliation package that purports to benefit working families,” Aronson said. “But if you don’t take care of the tax credits, working families will be left holding the bag.”

Brian Blase, president of Paragon Health Institute, a conservative health policy think tank, said the enhanced subsidies were supposed to be a temporary measure during the covid-19 pandemic to help people at risk of losing coverage.

Instead, he said, the enhanced subsidies facilitated fraud because enrollees did not need to verify their income eligibility to receive zero-premium plans if they reported incomes at or near the federal poverty level.

The enhanced subsidies also worsen health inflation, discourage employers from offering health insurance benefits, and crowd out alternative models, such as short-term insurance and Farm Bureau plans, Blase said.

“Permitting these subsidies to expire would just be going back to Obamacare as it was written,” Blase said. “That is a more efficient program than the program that we have now.”

New rules for the marketplace proposed by the Trump administration in March are already designed to address fraud, said Anna Howard, a policy expert with the American Cancer Society Cancer Action Network, which advocates for increased health insurance coverage. Howard said extending the enhanced tax credits would help ensure that people who are legitimately eligible for coverage can get it.

“We don’t want to see over 5 million people be kicked off their health insurance coverage out of fears of fraud when the policies being proposed don’t necessarily address fraud,” she said.

Without affordable premiums, many consumers will turn to short-term health plans, health care cost-sharing ministries, and other forms of coverage that do not have the benefits or protections of the health law, she said.

“These are plans that don’t provide coverage for prescription drugs, or they have lifetime and annual limits,” she said. “For a cancer patient, those plans don’t work.”

Though the enhanced subsidies do not expire until the end of the year, the Blue Cross Blue Shield Association would prefer Congress to act by fall to avoid confusion during open enrollment, said David Merritt, a senior vice president. Insurers are preparing rates to meet state deadlines. By October, consumers will receive 60-day plan renewal notices with their 2026 premiums.

Without enhanced subsidies, Merritt said, competition in the marketplace will wither, leading to fewer coverage options and higher prices, especially in states that have not expanded Medicaid eligibility and where Obamacare enrollment spiked during the past four years, like Florida and Texas. “Voters and patients are really going to see the impact,” he said.

Republican and Democratic representatives for some of the Florida congressional districts with the highest numbers of people in the marketplace did not respond to repeated interview requests.

Muralles, of North Miami, Florida, said she wants her representatives to work in the interest of constituents like herself, who need health insurance coverage to care for their families.

“Now is the time to prove to us that they are with us,” Muralles said. “When everybody’s healthy, everybody goes to work, everybody can pay taxes, everybody can have a better life.”

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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Nearly two-thirds of adults oppose President Donald Trump’s “One Big Beautiful Bill” approved in May by the House of Representatives, according to a KFF poll released Tuesday.

And even Trump’s most ardent supporters like the legislation a lot less when they learn how it would cut federal spending on health programs, the poll shows.

The KFF poll found that about 61% of Republicans and Republican-leaning independents — and 72% of the subset who identify with Trump’s “Make American Great Again” movement — support the bill, which would extend many of Trump’s 2017 tax cuts while reducing spending on domestic programs, including cutting billions from Medicaid.

But when pollsters told survey respondents about the bill’s consequences for health care, opposition grew, including among MAGA supporters.

For example, after being told that the bill would decrease funding for local hospitals and increase the number of people without health insurance, support among those who back MAGA dropped more than 20 percentage points — resulting in fewer than half the group still backing the bill.

Ashley Kirzinger, KFF’s director of survey methodology and associate director of its Public Opinion and Survey Research program, said it’s no surprise polling shows that party affiliation affects how most of the public views the bill.

“But the poll shows that support, even among MAGA supporters, drops drastically once the public hears more about how the bill could impact local hospitals and reduce Medicaid coverage,” she said.

“This shows how the partisan lens wears slightly when the public learns more about how the legislation could affect them and their families.”

KFF is a health policy research, polling, and news organization that includes KFF Health News.

House Speaker Mike Johnson, a Louisiana Republican who won passage of the legislation in the chamber he controls by a single vote on May 22, has insisted the bill would not “cut Medicaid.” The nonpartisan Congressional Budget Office, which calculates the effects of legislation on the nation’s deficits and debt, says the measure would reduce federal spending on Medicaid by $793 billion over 10 years, resulting in nearly 8 million more people becoming uninsured.

The bill is encountering strident opposition from the health industry, most notably hospitals that expect to see large cuts in funding as a result of millions of people losing Medicaid coverage. The House-passed legislation would increase the frequency of eligibility checks and require that most nondisabled adults regularly prove they are working, studying, or volunteering at least 80 hours a month to keep their coverage.

“This is common sense,” Johnson said May 25 on the CBS News program “Face the Nation.” “And when the American people understand what we are doing here, they applaud it.”

Critics say the bill marks the latest attempt by Republicans to roll back the Affordable Care Act.

As the Senate moves toward a possible vote on its version of the legislation before Independence Day, the KFF poll shows Medicaid and the ACA are more popular than ever.

About 83% of adults support Medicaid, including large majorities of Democrats (93%), independents (83%), and Republicans (74%). That’s up from 77% in January, with the poll finding the biggest jump in favorability among Republicans.

Medicaid and the related Children’s Health Insurance Program cover about 78 million people who are disabled or have low incomes.

About two-thirds of adults hold favorable views of the ACA, the most since the law’s enactment in 2010, as recorded in KFF polls. The law has only been consistently popular with a majority of adults since about 2021.

Views of the ACA remain split along partisan lines, with most Republicans (63%) holding unfavorable views and most Democrats (94%) and independents (71%) viewing it favorably.

The poll found other indications that the public may not understand key provisions of the GOP bill, including its work requirements.

The poll finds two-thirds of the public — including the vast majority of Republicans (88%) and MAGA supporters (93%) and half (51%) of Democrats — initially support requiring nearly all adults on Medicaid to prove they are working or looking for work, in school, or doing community service, with exceptions such as for caregivers and people with disabilities.

However, attitudes toward this provision shifted dramatically when respondents were presented with more information.

For example, when told most adults with Medicaid are already working or unable to work, and that those individuals could lose coverage due to the challenge of documenting it, about half of supporters changed their view, resulting in nearly two-thirds of adults opposing Medicaid work requirements and about a third supporting them.

The poll of 1,321 adults was conducted online and by telephone June 4-8 and has a margin of error of plus or minus 3 percentage points.

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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Ali Foley Shenk still remembers the panic when her 10-year-old son, Dean, finished a 20-ounce box of raisins in the seconds the cupboard was left unlocked. They rushed to the emergency room, fearing a dangerous bowel impaction.

The irony stung: When Dean was born, he was so weak and floppy he survived only with feeding tubes because he couldn’t suck or swallow. He was diagnosed as a baby with Prader-Willi syndrome — a rare disorder sparked by a genetic abnormality. He continued to be disinterested in food for years. But doctors warned that as Dean grew, his hunger would eventually become so uncontrollable he could gain dangerous amounts of weight and even eat until his stomach ruptured.

“It’s crazy,” said Foley Shenk, who lives in Richmond, Virginia. “All of a sudden, they flip.”

Prader-Willi syndrome affects up to 20,000 people in the U.S. The most striking symptom is its most life-threatening: an insatiable hunger known as hyperphagia that prompts caregivers to padlock cupboards and fridges, chain garbage cans, and install cameras. Until recently, the only treatment was growth hormone therapy to help patients stay leaner and grow taller, but it didn’t address appetite.

In March, the Food and Drug Administration approved Vykat XR, an extended-release version of the existing drug diazoxide choline, which eases the relentless hunger and may offer insights into the biology of extreme appetite and binge eating. This breakthrough for these patients comes as other drugs are revolutionizing how doctors treat obesity, which affects more than 40% of American adults. GLP-1 agonist medications Ozempic, Wegovy, and others also are delivering dramatic results for millions.

But what’s becoming clear is that obesity isn’t one disease — it’s many, said Jack Yanovski, a senior obesity researcher at the National Institutes of Health, who co-authored some of the Vykat XR studies. Researchers are learning that obesity’s drivers can be environmental, familial, or genetic. “It only makes sense that it’s complex to treat,” Yanovski said.

Obesity medicine is likely heading the way of treatments for high blood pressure or diabetes, with three to five effective options for different types of patients. For example, up to 15% of patients in the GLP-1 trials didn’t respond to those drugs, and at least one study found the medications didn’t significantly help Prader-Willi patients.

Yet, researchers say, efforts to understand how to treat obesity’s many causes and pathways are now in question as the Trump administration is dismantling the nation’s infrastructure for medical discovery.

While Health and Human Services Secretary Robert F. Kennedy Jr. promotes a “Make America Healthy Again” agenda centered on diet and lifestyle, federal funding for health research is being slashed, including some grants that support the study of obesity. University labs face cuts, FDA staffers are being laid off en masse, and rare disease researchers fear the ripple effects across all medical advances. Even with biotech partnerships — such as the work that led to Vykat XR — progress depends on NIH-funded labs and university researchers.

“That whole thing is likely to get disrupted now,” said Theresa Strong, research director for the Foundation for Prader-Willi Research.

HHS spokesperson Andrew Nixon said in a statement that no NIH awards for Prader-Willi syndrome research have been cut. “We remain committed to supporting critical research into rare diseases and genetic conditions,” he said.

But Strong said that already some of the contacts at the FDA she’d spent nearly 15 years educating about the disorder have left the agency. She’s heard that some research groups are considering moving their labs to Europe.

Early progress in hunger and obesity research is transforming the life of Dean Shenk. During the trial for Vykat XR, his anxiety about food eased so much that his parents began leaving cupboards unlocked.

Jennifer Miller, a pediatric endocrinologist at the University of Florida who co-led the Vykat XR trials, treats around 600 Prader-Willi patients, including Dean. She said the impact she’s seen is life-changing. Since the drug trial started in 2018, some of her adult patients have begun living independently, getting into college, and starting jobs — milestones that once felt impossible. “It opens up their world in so many ways.”

Over 26 years in practice, she’s also seen just how severely the disease hurts patients. One patient ate a four-pound bag of dehydrated potato flakes; another ingested all 10 frozen pizzas from a Costco pack; some ate pet food. Others have climbed out of windows, dived into dumpsters, even died after being hit by a car while running away from home in search of food.

Low muscle tone, developmental delays, cognitive disabilities, and behavioral challenges are also common features of the disorder.

Dean attends a special education program, his mother said. He also has narcolepsy and cataplexy — a sudden loss of muscle control triggered by strong emotions. His once-regular meltdowns and skin-picking, which led to deep, infected lesions, were tied to anxiety over his obsessive, almost painful urge to eat.

In the trial, though, his hyperphagia was under control, according to Miller and Dean’s mother. His lean muscle mass quadrupled, his body fat went down, and his bone mineral density increased. Even the skin-picking stopped, Foley Shenk said.

Vykat XR is not a cure for the disease. Instead, it calms overactive neurons in the hypothalamus that release neuropeptide Y — one of the body’s strongest hunger signals. “In most people, if you stop secreting NPY, hunger goes away,” said Anish Bhatnagar, CEO of Soleno Therapeutics, which makes the medication, the company’s first drug. “In Prader-Willi, that off switch doesn’t exist. It’s literally your brain telling you, ‘You’re starving,’ as you eat.”

GLP-1 drugs, by contrast, mimic a gut hormone that helps people feel full by slowing digestion and signaling satiety to the brain.

Vykat XR’s possible side effects include high blood sugar, increased hair growth, and fluid retention or swelling, but those are trade-offs that many patients are willing to make to get some relief from the most devastating symptom of the condition.

Still, the drug’s average price of $466,200 a year is staggering even for rare-disease treatments. Soleno said in a statement it expects broad coverage from both private and public insurers and that the copayments will be “minimal.” Until more insurers start reimbursing the cost, the company is providing the drug free of charge to trial participants.

Soleno’s stock soared 40% after the FDA nod and has held fairly steady since, with the company valued at nearly $4 billion as of early June.

While Vykat XR may be limited in whom it can help with appetite control, obesity researchers are hoping the research behind it may help them decode the complexity of hunger and identify other treatment options.

“Understanding how more targeted therapies work in rare genetic obesity helps us better understand the brain pathways behind appetite,” said Jesse Richards, an internal medicine physician and the director of obesity medicine at the University of Oklahoma-Tulsa’s School of Community Medicine.

That future may already be taking shape. For Prader-Willi, two other notable phase 3 clinical trials are underway, led by Acadia Pharmaceuticals and Aardvark Therapeutics, each targeting different pathways. Meanwhile, hundreds of trials for general obesity are currently recruiting despite the uncertainties in U.S. medical research funding.

That brings more hope to patients like Dean. Nearly six years after starting treatment, the now-16-year-old is a calmer, happier kid, his mom said. He’s more social, has friends, and can focus better in school. With the impulse to overeat no longer dominating his every thought, he has space for other interests — Star Wars, American Ninja Warrior, and a healthy appreciation for avocados among them.

“Before the drug, it just felt like a dead end. My child was miserable,” Foley Shenk said. “Now, we have our son back.”

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

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BRIDGEPORT, W.Va. — By the time Eric Tennant was diagnosed in 2023 with a rare cancer of the bile ducts, the disease had spread to his bones. He weighed 97 pounds and wasn’t expected to survive a year with stage 4 cancer.

Two years later, grueling rounds of chemotherapy have slowed the cancer’s progress, even as it has continued to spread. But chemotherapy has also ravaged Tennant’s body and his quality of life.

Recently, however, the 58-year-old had reason to hope things would improve. Last fall, his wife, Rebecca, learned of a relatively new, noninvasive procedure called histotripsy, which uses targeted ultrasound waves to destroy tumors in the liver. The treatment could extend his life and buy him more downtime between rounds of chemotherapy.

Early this year, Tennant’s oncologist agreed he was a good candidate since the largest tumor in his body is in his liver. But that’s when his family began fighting another adversary: their health insurer, which decided the treatment was “not medically necessary,” according to insurance paperwork.

Health insurers issue millions of denials every year. And like the Tennants, many patients find themselves stuck in a convoluted appeals process marked by long wait times, frustrating customer service encounters, and decisions by medical professionals they’ve never met who may lack relevant training.

Recent federal and state efforts, as well as changes undertaken by insurance companies themselves, have attempted to improve a 50-year-old system that disproportionately burdens some of the sickest patients at the worst times. And yet many doctors complain that insurance denials are worse than ever as the use of prior authorization has ramped up in recent years, reporting by KFF Health News and NBC News found.

When the Tennant family was told histotripsy would cost $50,000 and insurance wouldn’t cover it, they appealed the denial four times.

“It’s a big mess,” said Rebecca Tennant, who described feeling like a pingpong ball, bouncing between the insurer and various health care companies involved in the appeals process.

“There’s literally nothing we can do to get them to change,” she said in an April interview with KFF Health News. “They’re, like, not accountable to anyone.”

While the killing of UnitedHealthcare chief executive Brian Thompson in December incited a fresh wave of public fury about denials, there is almost no hope of meaningful change on the horizon, said Jay Pickern, an assistant professor of health services administration at Auburn University.

“You would think the murder of a major health insurance CEO on the streets of New York in broad daylight would be a major watershed moment,” Pickern said. Yet, once the news cycle died down, “everything went back to the status quo.”

An Unintended Consequence of Health Reform?

Prior authorization varies by plan but often requires patients or their providers to get permission (also called precertification, preauthorization, or preapproval) before filling prescriptions, scheduling imaging, surgery, or an inpatient hospital stay, among other expenses.

The practice isn’t new. Insurers have used prior authorization for decades to limit fraud, prevent patient harm, and control costs. In some cases, it is used to intentionally generate profits for health insurers, according to a 2024 U.S. Senate report. By denying costly care, companies pay less for health care expenses while still collecting premiums.

“At the end of the day, they’re a business and they exist to make money,” said Pickern, who wrote about the negative impacts of prior authorization on patient care for The American Journal of Managed Care.

For most patients, though, the process works seamlessly. Prior authorization mostly happens behind the scenes, almost always electronically, and nearly all requests are quickly, or even instantly, approved.

But the use of prior authorization has also increased in recent years. That’s partly due to the growth of enrollment in Medicare Advantage plans, which rely heavily on prior authorization compared with original Medicare. Some health policy experts also point to the passage of the Affordable Care Act in 2010, which prohibited health insurers from denying coverage to patients with preexisting conditions, prompting companies to find other ways to control costs.

“But we can’t really prove this,” said Kaye Pestaina, director of the Program on Patient and Consumer Protection at KFF, a health information nonprofit that includes KFF Health News. Health insurers haven’t been historically transparent about which services require prior authorization, she said, making it difficult to draw comparisons before and after the passage of the Affordable Care Act.

Meanwhile, many states are looking to overhaul the prior authorization process.

In March, Virginia passed a law that will require health insurers to publicly post a list of health care services and codes for which prior authorization is required. A North Carolina bill would require doctors who review patient appeals to have practiced medicine in the same specialty as the patient’s provider. The West Virginia Legislature passed bills in both 2019 and 2023 requiring insurers to respond to nonurgent authorization requests within five days and more urgent requests within two days, among other mandates.

And in 2014, the South Carolina Department of Health and Human Services temporarily lifted all prior authorization requirements for Medicaid beneficiaries seeking rehabilitative behavioral health services.

Federal rules to modify prior authorization that were introduced by the first Trump administration and finalized by the Biden administration are set to take effect next year, with the aim of streamlining the process, reducing wait times, and improving transparency.

These changes were supported by AHIP, a trade group that represents health insurers.

‘Sick With Little Recourse’

But the new federal rules won’t prevent insurance companies from denying payment for doctor-recommended treatment, and they apply only to some categories of health insurance, including Medicare Advantage and Medicaid. Nearly half the U.S. population is covered by employer-sponsored plans, which remain untouched by the new rules.

For some patients, the stakes couldn’t be higher.

On May 12, Alexander Schrift, 35, died at home in San Antonio, Florida, less than two months after his insurance company refused to cover the cancer drug ribociclib. It’s used to treat breast cancer but has shown promise in treating the same type of brain tumor Schrift was diagnosed with in 2022, according to researchers at the Dana-Farber Cancer Institute in Boston and the Institute of Cancer Research in London.

But Schrift’s insurance company refused to pay. The Right to Try Act, signed by President Donald Trump in 2018, entitles patients with terminal illnesses to try experimental drugs, but it does not obligate insurance companies to pay for them.

In May, Sheldon Ekirch, 30, of Henrico, Virginia, said her parents withdrew money from their retirement savings to pay for treatment denied by her health insurance company.

Ekirch, who was diagnosed with small fiber neuropathy in 2023, was recommended by her doctor to try an expensive blood plasma treatment called intravenous immunoglobulin to ease her near-constant pain. In April, a state agency charged with reviewing insurance denials upheld her insurer’s decision. Out-of-pocket, the treatment may cost her parents tens of thousands of dollars.

“Never in a million years did I think I’d end up here,” Ekirch said, “sick with little recourse.”

Earlier this year, New Jersey congressman Jefferson Van Drew, a Republican, introduced a bill that would eliminate prior authorization altogether. But history suggests that would create new problems.

When South Carolina Medicaid lifted prior authorization for rehabilitative behavioral health services in 2014, the department’s costs for those services skyrocketed from $300,000 to $2 million per week, creating a $54 million budget shortfall after new providers flooded the market. Some providers were eventually referred to the South Carolina Attorney General’s Office for Medicaid fraud investigation. The state Medicaid agency eventually reinstated prior authorization for specific services, spokesperson Jeff Leieritz said.

What happened in South Carolina illustrates a common argument made by insurers: Prior authorization prevents fraud, reduces overspending, and guards against potential harm to patients.

On the other hand, many doctors and patients claim that cost-containment strategies, including prior authorization, do more harm than good.

On Feb. 3, 2024, Jeff Hall of Estero, Florida, became paralyzed from the neck down and spent weeks in a coma after he suddenly developed Guillain-Barré Syndrome. The cause of his illness remains unknown.

Hall, now 51, argued that the Florida Blue health insurance plan he purchased on the federal marketplace hindered his recovery by capping the number of days he was allowed to remain in an acute rehabilitation hospital last year.

Hall said that after he was forced to “step down” to a lower-level nursing facility, his health deteriorated so rapidly within six days that he was sent to the emergency room, placed on a ventilator, and required a second tracheostomy. Hall believes the insurance company’s coverage limits set his recovery back by months — and, ironically, cost the insurer more. His wife, Julie, estimated Jeff’s medical bills have exceeded $5 million, and most of his care has been covered by his insurer.

“Getting better is not always the goal of an insurance company. It’s a business,” Jeff Hall said. “They don’t care.”

In a prepared statement, Florida Blue spokesperson Jose Cano said the company understands “it can be a challenge when a member reaches the limit of their coverage for a specific service or treatment.” He encouraged members affected by coverage limits to contact their health care providers to “explore service and treatment options.”

A ‘Rare and Exceptional’ Reversal

Back in West Virginia, Eric and Rebecca Tennant say they are realistic about Eric’s prognosis.

They never expected histotripsy to cure his cancer. At best, the procedure could buy him more time and might allow him to take an extended break from chemotherapy. That makes it worth trying, they said.

As a safety instructor with the West Virginia Office of Miners’ Health Safety and Training, Eric Tennant is a state employee and is insured by West Virginia’s Public Employees Insurance Agency.

As the Tennants pleaded with the state insurance agency to cover histotripsy, they faced a list of other companies involved in the decision, including UMR, a UnitedHealthcare subsidiary that contracts with West Virginia to manage the public employee plans, and MES Peer Review Services, a Massachusetts company that upheld the insurer’s decision in March, citing that histotripsy is “unproven in this case and is not medically necessary.”

None of their appeals worked. After KFF Health News and NBC News reached out to West Virginia’s Public Employees Insurance Agency with questions for this article, the agency changed its mind, explaining the insurer had consulted with medical experts to further evaluate the case.

“This decision reflects a rare and exceptional situation” and does not represent a change in the Public Employees Insurance Agency’s overall coverage policies,” Director Brent Wolfingbarger said in a prepared statement to KFF Health News.

In a separate prepared statement, UnitedHealthcare spokesperson Eric Hausman said the company sympathizes with “anyone navigating through life-threatening care decisions.”

“Currently, there is no evidence that histotripsy is as effective as alternative treatment options available,” he said in late May, after the earlier insurance denials were reversed, “and its impact on survival or cancer recurrence is unknown.”

MES Peer Review Services did not respond to a request for an interview.

Meanwhile, Rebecca Tennant worries it might be too late. She said her husband was first evaluated for histotripsy in February. But his health has recently taken a turn for the worse. In late May and early June, she said, he spent five days in the hospital after developing heart and lung complications.

Eric Tennant is no longer considered a viable candidate for histotripsy, his wife said, although the Tennants are hopeful that will change if his health improves. Scans scheduled for July will determine whether his cancer has continued to progress. Rebecca Tennant blames her husband’s insurance plan for wasting months of their time.

“Time is precious,” she said. “They know he has stage 4 cancer, and it’s almost like they don’t care if he lives or dies.”

Do you have an experience with prior authorization you’d like to share? Click here to tell your story.

NBC News health and medical unit producer Jason Kane and correspondent Erin McLaughlin contributed to this report.

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

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Céline Gounder, KFF Health News’ editor-at-large for public health, discussed on “CBS Mornings Plus” on June 10 how Health and Human Services Secretary Robert F. Kennedy Jr.’s removal of members of the CDC vaccine advisory committee could affect public health.

• Click here to watch Gounder on “CBS Mornings Plus.”

Freelance journalist and KFF Health News contributor Leah Fabel discussed child caregivers on Minnesota Public Radio’s “All Things Considered” on June 4.

• Click here to hear Fabel on “All Things Considered.”
• Read Fabel’s “Role Reversal: Millions of Kids Are Caregivers for Elders. Why Their Numbers Might Grow.”

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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Hundreds of workers at the National Institutes of Health — the largest public funder of biomedical research in the world — are openly protesting the Trump administration’s policies regarding the agency, saying the upheaval and harm being done to the institution is so great that they felt they had no choice.

A letter sent June 9 to agency director Jay Bhattacharya, signed by more than 300 current or former workers — including more than a quarter who signed their names publicly — is an extraordinary rebuke of the Trump administration’s actions against the NIH this year. And that is no small list. They include terminating hundreds of grants funding scientific and biomedical research across the country, firing more than 1,000 employees, tanking funding for young scientists, and moving to end billions in funds to partner research institutions overseas, a move current and former NIH workers say will harm work to combat rare cancers and infectious diseases, among other research.

“It’s been soul-crushing,” said one NIH worker who signed the letter, whom KFF Health News agreed not to name because they are not authorized to speak to the press and fear retaliation. “This matters for everyone who has ever been sick or knows anyone who has.”

Bhattacharya received the letter — which he said “has some fundamental misconceptions about the policy directions the NIH has taken in recent months” — a day before testifying in front of a Senate subcommittee about the Trump White House’s budget proposal for the NIH. That proposal seeks to slash the agency’s funding by 40% and collapse its 27 institutes and centers into eight. And it made for some fireworks with lawmakers, particularly Democrats, who lodged numerous complaints.

“What the Trump administration is doing to NIH right now is, frankly, catastrophic,” Sen. Patty Murray (D-Wash.) said at the Senate Appropriations subcommittee hearing June 10.

Bhattacharya said that the budget “is a collaboration” with Congress, making it clear that the White House’s proposal is far from set in stone. But he also took responsibility for specific actions the administration has taken without congressional involvement. Asked by Sen. Tammy Baldwin (D-Wis.) who is making decisions to withhold grant funding, Bhattacharya said, “I’ve made those decisions” to “move away from politicized science.”

In a town hall meeting with NIH employees in May, a recording of which KFF Health News obtained, Bhattacharya contended that certain NIH-supported research focused on racial and ethnic minorities is “ideological in nature, and that doesn’t advance the health and well-being of anybody” — a characterization that NIH workers dispute.

“They’re actually doing the very thing that they say they’re not doing,” one worker said, “and cutting whole areas of science that are critical to understanding how to improve patient care and patient outcomes.”

We’d like to speak with current and former personnel from the Department of Health and Human Services or its component agencies who believe the public should understand the impact of what’s happening within the federal health bureaucracy. Please message KFF Health News on Signal at (415) 519-8778 or get in touch here.

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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KFF Health News contributor Andy Miller discussed the Trump presidency and health care on WUGA’s “The Georgia Health Report” on Nov. 8.

• Click here to hear Miller on “The Georgia Health Report”
• Read Stephanie Armour’s “Trump’s White House Return Poised To Tangle Health Care Safety Net”

KFF Health News correspondent Brett Kelman discussed dental implants on KCBS on Nov. 4.

• Click here to hear Kelman on KCBS
• Read Kelman’s “Dentists Are Pulling ‘Healthy’ and Treatable Teeth To Profit From Implants, Experts Warn,” with reporting from Anna Werner, CBS News

KFF Health News California correspondent Christine Mai-Duc discussed an abortion clinic lawsuit on KCBS on Oct. 31.

• Click here to hear Mai-Duc on KCBS
• Read Mai-Duc’s “‘A Pressure Campaign’: Beverly Hills Settles After Allegedly Blocking Abortion Clinic”

KFF Health News South Dakota correspondent Arielle Zionts discussed the Purchased/Referred Care program for Native American patients on “Native America Calling” on Oct. 24.

• Click here to hear Zionts on “Native America Calling”
• Read Zionts’, “Patients Suffer When Indian Health Service Doesn’t Pay for Outside Care,” with reporting from Katheryn Houghton

KFF Health News senior fellow and editor-at-large for public health Céline Gounder shared tips for preventing cardiovascular disease on CBS’ “CBS Mornings” on Oct. 24. Gounder also joined “CBS News 24/7” to discuss McDonald’s Quarter Pounder hamburgers linked to an E. coli outbreak and “CBS Mornings” to discuss a frozen waffle recall due to a potential listeria contamination, both on Oct. 22.

• Click here to watch Gounder on “CBS Mornings” on Oct. 24
• Click here to watch Gounder on “CBS News 24/7” on Oct. 22
• Click here to watch Gounder on “CBS Mornings” on Oct. 22

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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Robert F. Kennedy Jr., President-elect Donald Trump’s pick to lead the Department of Health and Human Services, is coming into the nomination process in an unusual position, with a long list of his own policy priorities separate from the president-elect’s, and a public promise by Trump to let him “go wild” on his ideas.

This article also ran on CBS News.

Céline Gounder, the editor-at-large for public health at KFF Health News and a CBS News medical contributor, answers questions below about the role Kennedy has been tapped to take on and some of the ideas in the sweeping “Make America Healthy Again” platform he may try to push through.

Q: What is the role of the Department of Health and Human Services, and how much power does the HHS secretary have over its work?

A: The U.S. Department of Health and Human Services comprises several agencies and offices including the National Institutes of Health, the Centers for Disease Control and Prevention, the Food and Drug Administration, the Centers for Medicare & Medicaid Services, the Office of the Surgeon General, and much more.

There is a big difference between political appointees and career civil servants. Political appointees set strategic priorities and align their department or agency’s policies with the current administration’s objectives. Civil servants have the institutional knowledge to know how to get things done and have specialized scientific or technical expertise. Scientific questions require specialized expertise. This is why there are career scientists who advise the HHS secretary, NIH director, CDC director, and FDA commissioner.

The HHS secretary has the authority to establish regulations that govern health, including food and drug safety, public health, and health care quality. The HHS secretary can declare public health emergencies and coordinate federal responses to health crises, such as disease outbreaks or natural disasters. The secretary wields significant influence over the department’s policies and its constituent agencies, which include the CDC, FDA, NIH, and others.

The HHS secretary is also in a position to shape public opinion if given a platform to do so by the media. Absent media attention, their influence on public opinion is more limited. We in the media have a responsibility to fact-check their statements and hold those in power accountable — regardless of who is in power.

Q: One of Kennedy’s most controversial stances is his criticism of vaccines, promoting the idea that they cause autism, among other conditions, and claiming “there’s no vaccine that is safe and effective.” What is the reality?

A: Extensive research has conclusively shown that vaccines do not cause autism. The “research” behind these claims was retracted due to ethical violations and sloppy work. The doctor who originally made those claims lost his medical license as a result of his professional misconduct.

For parents whose kids have autism or people who have autism, this matters. For too long, claims about the safety of vaccines have not only put people at unnecessary risk of getting illnesses that vaccines can prevent, but have also been a red herring, distracting people from the real causes of autism and how to diagnose them and treat them. That distraction is unproductive and harmful.

Secondly, nothing in this world is 100% safe and effective. It’s all about weighing risks, the pros and cons. Is one choice more beneficial or more risky? Do the pros of wearing a seat belt in the car outweigh the risks? Do the pros of exercising regularly outweigh the risks of not exercising? You could get injured while exercising. Do the pros of vaccinating instead of allowing infectious diseases to spread in the community outweigh the cons? Yes, yes, and yes.

Q: Kennedy has said he wants to leave it up to individuals to decide whether to vaccinate themselves or their children. What impact could that have?

A: Increasingly, people are formulating opinions about vaccines based not on science but on Google searches, social media, what family and friends think, and personal observation. That is not research. Research is formulating a hypothesis and trying to disprove that hypothesis. It means you understand how to differentiate correlation from causation. And it means doing repeated experiments to show consistency, not just a chance or random result.

This isn’t a question of whether people are smart or not. But most people don’t have the training, experience, and context to objectively assess the pros and cons of vaccination. You wouldn’t want me repairing your car’s transmission or brake system. I’m not stupid, but I have no training or experience in this.

The risk of leaving these decisions to untrained individuals is that these decisions won’t be made on science. They will be made based on emotion and confirmation bias, which is to say, Google searches looking for opinions that line up with your preexisting beliefs or inclinations. This will put kids at risk, and because vaccines protect against transmissible infectious diseases this will put others in the community at risk, especially other kids and people who are immunocompromised.

Q: Kennedy has also said chemicals in food are tied to autism as well as psychotic episodes and depression. What do we know about the connection between food and mental health?

A: He’s not wrong that there is a relationship between diet and autism as well as diet and mental health. These are areas of ongoing research. No diet has been proven to cure or universally improve autism or mental health symptoms, but certain dietary interventions improve symptoms in some people. These dietary changes may include elimination of ultraprocessed foods, eliminating gluten, and avoiding certain food additives or preservatives.

Q: Kennedy has said one of the Trump administration’s first acts will be to work to remove fluoride from drinking water, arguing it’s connected to cancer, IQ loss, thyroid disease, and other health problems. Why is fluoride in drinking water, and is it safe?

A: Fluoride is put in the water to reduce the risk of cavities, especially in kids.

As with many things, fluoride safety is all about dose. Drinking a few glasses of water a day is healthy. Drinking from a fire hydrant all day would land you in the hospital. The level of fluoride in U.S. water is safe and protects against tooth decay.

When municipalities stopped putting fluoride in the water, cavity rates went up. This was observed, for example, in Calgary, Canada, and in Juneau, Alaska.

There are parts of the world, including India, China, and East Africa, where fluoride levels 30 to 40 times higher than levels in the U.S. have been found to be harmful. But we don’t have anywhere near those levels of fluoride in our water.

But Kennedy’s statement demonstrates a common misunderstanding about public health authorities in the U.S. We are the United States of America — public health powers reside at the state level. The federal government has the authority to tax and spend and to regulate commerce across state lines, and federal government authorities derive from that.

The CDC provides scientific guidance to help state and local authorities to make informed decisions. The CDC does not mandate fluoridation. The EPA sets the maximum allowable fluoride concentration in public water systems. But states have the authority to mandate fluoridation or can leave it up to local jurisdictions.

Q: Kennedy has criticized multiple public health agencies he could now lead. He has said the FDA’s “war on public health is about to end,” claiming the agency suppresses anything that “advances human health and can’t be patented” by pharmaceutical companies. What do you make of these criticisms?

A: This again demonstrates a misunderstanding of federal agency authority. Congress has passed laws that give the FDA specific authority to regulate drugs, supplements, and food, and those laws grant the FDA different powers over drugs, supplements, and food.

If anything, given the Supreme Court’s “major questions doctrine,” the courts can determine that agencies may not make regulations on issues of significant economic or political importance unless Congress has clearly authorized such actions. For example, in the case FDA v. Brown & Williamson Tobacco Corp. (2000), the Supreme Court concluded that the FDA lacked the power to regulate tobacco. In 2009, Congress passed the Family Smoking Prevention and Tobacco Control Act, granting the FDA the authority to regulate tobacco.

Drugs require FDA approval before they can be marketed. Under the law, drugs are defined as substances used to diagnose, treat, or prevent disease.

Supplements don’t need FDA approval before they are sold. The FDA monitors dietary supplements once they are on the market and can take action if they are unsafe or if they make claims about diagnosis, treatment, or prevention of disease.

Dietary supplement manufacturers often choose not to seek FDA approval to market their products as drugs because:

• There are less stringent requirements on dietary supplements than on drugs.
• The FDA approval process is expensive and lengthy. Clinical trials take years to conduct and cost millions of dollars. Manufacturers foot the bill for clinical trials.
• Dietary supplements can be sold directly to consumers without a prescription.

The manufacturer decides whether it wants to seek FDA approval for a drug or if it wants to market a product as a dietary supplement — and that decision typically comes down to time and money. Pharmaceutical companies are less inclined to invest millions of dollars in clinical trials of unpatented treatments due to the lack of exclusive marketing rights (in other words, a time-limited monopoly), which can affect profitability.

The FDA often goes after supplement brands that test this line when it sees companies marketing products with claims that amount to what should be regulated as a drug. This is why supplements often carry a disclaimer that they aren’t being sold to “diagnose, treat, cure, or prevent any disease.” Kennedy has praised the supplement industry for “fighting back,” following a court action over an anti-aging supplement that the FDA argued should be regulated as a drug.

Finally, the FDA doesn’t grant patents. That’s the job of the U.S. Patent and Trademark Office.

Q: Trump has said Kennedy will “end the Chronic Disease epidemic.” What are some of the positive actions he could take if he becomes HHS secretary to reduce chronic disease in the U.S.?

A: Kennedy has called for greater regulation of food additives and ultraprocessed foods. Ultraprocessed foods in American diets have led to an explosion in obesity, diabetes, high blood pressure, and other chronic disease.

However, it’s unclear which factions within Trump’s orbit will prevail. Congress may have to give the FDA the authority to regulate more aggressively and the funding to enforce those regulations. Historically, the Republican Party has been opposed to regulation. Trump’s chief of staff pick, Susie Wiles, is a longtime lobbyist who has worked on behalf of the food, insurance, and tobacco industries.

The Heritage Foundation’s Project 2025 — which involved a number of former Trump advisers, but which Trump has tried to distance himself from — would roll back dietary guidelines, making it harder to fight ultraprocessed foods.

Alexander Tin contributed to this report.

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

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In April, just 12 weeks into her pregnancy, Kathleen Clark was standing at the receptionist window of her OB-GYN’s office when she was asked to pay $960, the total the office estimated she would owe after she delivered.

Clark, 39, was shocked that she was asked to pay that amount during this second prenatal visit. Normally, patients receive the bill after insurance has paid its part, and for pregnant women that’s usually only when the pregnancy ends. It would be months before the office filed the claim with her health insurer.

Clark said she felt stuck. The Cleveland, Tennessee, obstetrics practice was affiliated with a birthing center where she wanted to deliver. Plus, she and her husband had been wanting to have a baby for a long time. And Clark was emotional, because just weeks earlier her mother had died.

“You’re standing there at the window, and there’s people all around, and you’re trying to be really nice,” recalled Clark, through tears. “So, I paid it.”

On online baby message boards and other social media forums, pregnant women say they are being asked by their providers to pay out-of-pocket fees earlier than expected. The practice is legal, but patient advocacy groups call it unethical. Medical providers argue that asking for payment up front ensures they get compensated for their services.

How frequently this happens is hard to track because it is considered a private transaction between the provider and the patient. Therefore, the payments are not recorded in insurance claims data and are not studied by researchers.

Patients, medical billing experts, and patient advocates say the billing practice causes unexpected anxiety at a time of already heightened stress and financial pressure. Estimates can sometimes be higher than what a patient might ultimately owe and force people to fight for refunds if they miscarry or the amount paid was higher than the final bill.

Up-front payments also create hurdles for women who may want to switch providers if they are unhappy with their care. In some cases, they may cause women to forgo prenatal care altogether, especially in places where few other maternity care options exist.

It’s “holding their treatment hostage,” said Caitlin Donovan, a senior director at the Patient Advocate Foundation.

Medical billing and women’s health experts believe OB-GYN offices adopted the practice to manage the high cost of maternity care and the way it is billed for in the U.S.

When a pregnancy ends, OB-GYNs typically file a single insurance claim for routine prenatal care, labor, delivery, and, often, postpartum care. That practice of bundling all maternity care into one billing code began three decades ago, said Lisa Satterfield, senior director of health and payment policy at the American College of Obstetricians and Gynecologists. But such bundled billing has become outdated, she said.

Previously, pregnant patients had been subject to copayments for each prenatal visit, which might lead them to skip crucial appointments to save money. But the Affordable Care Act now requires all commercial insurers to fully cover certain prenatal services. Plus, it’s become more common for pregnant women to switch providers, or have different providers handle prenatal care, labor, and delivery — especially in rural areas where patient transfers are common.

Some providers say prepayments allow them to spread out one-time payments over the course of the pregnancy to ensure that they are compensated for the care they do provide, even if they don’t ultimately deliver the baby.

“You have people who, unfortunately, are not getting paid for the work that they do,” said Pamela Boatner, who works as a midwife in a Georgia hospital.

While she believes women should receive pregnancy care regardless of their ability to pay, she also understands that some providers want to make sure their bill isn’t ignored after the baby is delivered. New parents might be overloaded with hospital bills and the costs of caring for a new child, and they may lack income if a parent isn’t working, Boatner said.

In the U.S., having a baby can be expensive. People who obtain health insurance through large employers pay an average of nearly $3,000 out-of-pocket for pregnancy, childbirth, and postpartum care, according to the Peterson-KFF Health System Tracker. In addition, many people are opting for high-deductible health insurance plans, leaving them to shoulder a larger share of the costs. Of the 100 million U.S. people with health care debt, 12% attribute at least some of it to maternity care, according to a 2022 KFF poll.

Families need time to save money for the high costs of pregnancy, childbirth, and child care, especially if they lack paid maternity leave, said Joy Burkhard, CEO of the Policy Center for Maternal Mental Health, a Los Angeles-based policy think tank. Asking them to prepay “is another gut punch,” she said. “What if you don’t have the money? Do you put it on credit cards and hope your credit card goes through?”

Calculating the final costs of childbirth depends on multiple factors, such as the timing of the pregnancy, plan benefits, and health complications, said Erin Duffy, a health policy researcher at the University of Southern California’s Schaeffer Center for Health Policy and Economics. The final bill for the patient is unclear until a health plan decides how much of the claim it will cover, she said.

But sometimes the option to wait for the insurer is taken away.

During Jamie Daw’s first pregnancy in 2020, her OB-GYN accepted her refusal to pay in advance because Daw wanted to see the final bill. But in 2023, during her second pregnancy, a private midwifery practice in New York told her that since she had a high-deductible plan, it was mandatory to pay $2,000 spread out with monthly payments.

Daw, a health policy researcher at Columbia University, delivered in September 2023 and got a refund check that November for $640 to cover the difference between the estimate and the final bill.

“I study health insurance,” she said. “But, as most of us know, it’s so complicated when you’re really living it.”

While the Affordable Care Act requires insurers to cover some prenatal services, it doesn’t prohibit providers from sending their final bill to patients early. It would be a challenge politically and practically for state and federal governments to attempt to regulate the timing of the payment request, said Sabrina Corlette, a co-director of the Center on Health Insurance Reforms at Georgetown University. Medical lobbying groups are powerful and contracts between insurers and medical providers are proprietary.

Because of the legal gray area, Lacy Marshall, an insurance broker at Rapha Health and Life in Texas, advises clients to ask their insurer if they can refuse to prepay their deductible. Some insurance plans prohibit providers in their network from requiring payment up front.

If the insurer says they can refuse to pay up front, Marshall said, she tells clients to get established with a practice before declining to pay, so that the provider can’t refuse treatment.

Clark said she met her insurance deductible after paying for genetic testing, extra ultrasounds, and other services out of her health care flexible spending account. Then she called her OB-GYN’s office and asked for a refund.

“I got my spine back,” said Clark, who had previously worked at a health insurer and a medical office. She got an initial check for about half the $960 she originally paid.

In August, Clark was sent to the hospital after her blood pressure spiked. A high-risk pregnancy specialist — not her original OB-GYN practice — delivered her son, Peter, prematurely via emergency cesarean section at 30 weeks.

It was only after she resolved most of the bills from the delivery that she received the rest of her refund from the other OB-GYN practice.

This final check came in October, just days after Clark brought Peter home from the hospital, and after multiple calls to the office. She said it all added stress to an already stressful period.

“Why am I having to pay the price as a patient?” she said. “I’m just trying to have a baby.”

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 United States has made almost no progress in closing racial health disparities despite promises, research shows. The government, some critics argue, is often the underlying culprit.

KFF Health News undertook a yearlong examination of how government decisions undermine Black health — reviewing court and inspection records and government reports, and interviewing dozens of academic researchers, doctors, politicians, community leaders, grieving moms, and patients.

During the past two decades there have been 1.63 million excess deaths among Black Americans relative to white Americans. That represents a loss of more than 80 million years of life, according to a 2023 JAMA study.

The video features senior correspondents Fred Clasen-Kelly and Renuka Rayasam, along with Morris Brown, a family care physician in Kingstree, South Carolina.

Learn more about the “Systemic Sickness” series here.

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 HostJulie RovnerKFF 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.Come January, Republicans will control the House of Representatives, Senate, and White House, regaining full power for the first time since 2018. That will give them significant clout to dramatically change health policy. But slim margins in Congress will leave little room for dissent.

Meanwhile, President-elect Donald Trump has vowed not to touch Medicare, though there are Medicare-related issues — including drug price negotiations and physician pay — that will soon demand attention.

This week’s panelists are Julie Rovner of KFF Health News, Anna Edney of Bloomberg News, Rachel Roubein of The Washington Post, and Lauren Weber of The Washington Post.

PanelistsAnna EdneyBloomberg@annaedney Read Anna's stories.Rachel RoubeinThe Washington Post@rachel_roubein Read Rachel's stories.Lauren WeberThe Washington Post@LaurenWeberHP Read Lauren's stories.Among the takeaways from this week’s episode:

• Republicans will control the House and the Senate beginning next year, potentially offering Trump crucial votes in support of his nominees and agenda. However, the party will govern with only a narrow majority in both chambers, which could hamper its ability to make sweeping or controversial changes. Regardless, the GOP will steer legislative efforts, such as setting government spending levels and limits, and control committees that decide what to prioritize and oversee.
• Trump this week named several people he intends to nominate to his Cabinet. Yet many of his picks lack relevant experience or have staked out controversial policy positions — or both — raising the question: Can they clear the Senate confirmation process? Trump has suggested using recess appointments to get around that, a method that would largely bypass the Senate and limit his Cabinet secretaries’ authority.
• Meanwhile, among the issues on Robert F. Kennedy Jr.’s health agenda are some that resonate with Democrats, such as cracking down on ultra-processed foods and food dyes. Notably, those sorts of initiatives — which could tighten rules for businesses, for instance — have not been part of the traditional conservative playbook.
• And, looking ahead, there’s a lot the Trump administration could do to further erode abortion rights, and the GOP is likely to see this as a moment for trying things.

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

Julie Rovner: KFF Health News’ “In Vermont, Where Almost Everyone Has Insurance, Many Can’t Find or Afford Care,” by Phil Galewitz.

Anna Edney: The Atlantic’s “Throw Out Your Black Plastic Spatula,” by Zoë Schlanger.

Rachel Roubein: Politico’s “‘Been a Long Time Since I Felt That Way’: Sexually Transmitted Infection Numbers Provide New Hope,” by Alice Miranda Ollstein.

Lauren Weber: JAMA Network Open’s “Medical Board Discipline of Physicians for Spreading Medical Misinformation,” by Richard S. Saver.

Also mentioned in this week’s podcast:

• The Washington Post’s “RFK Jr. Faces Battles in Question To Change America’s Food,” by Rachel Roubein, Lauren Weber, Michael Scherer, and David Ovalle.
• CNN’s “Lunchables Removed From National School Lunch Program,” by Madeline Holcombe.
• Politico’s “Abortion Opponents Prepare To Undermine Just-Passed Ballot Measures,” by Alice Miranda Ollstein.
• The Wall Street Journal’s “The Sickest Patients Are Fleeing Private Medicare Plans — Costing Taxpayers Billions,” by Anna Wilde Mathews, Christopher Weaver, and Tom McGinty.

CreditsTaylor CookAudio producerLonnie RoAudio producerEmmarie Huetteman Editor To hear all our podcasts, click here.

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

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

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Many scientists at the federal health agencies await the second Donald Trump administration with dread as well as uncertainty over how the president-elect will reconcile starkly different philosophies among the leaders of his team.

Trump has promised he would allow Robert F. Kennedy Jr. to “go wild” on medicines, food, and health. With that, a radical antiestablishment medical movement with roots in past centuries could threaten the achievements of a science-based public health order painstakingly built since World War II, some of these scientists fear.

If Kennedy makes good on his vision for transforming public health, childhood vaccine mandates could wither. New vaccines might never win approval, even as the FDA allows dangerous or inefficient therapies onto the market. Agency websites could trumpet unproven or debunked health ideas. And if Trump’s plan to weaken civil service rights goes through, anyone who questions these decisions could be summarily fired.

“Never has anybody like RFK Jr. gotten anywhere close to the position he may be in to actually shape policy,” said Lewis Grossman, a law professor at American University and the author of “Choose Your Medicine,” a history of U.S. public health.

Kennedy and an adviser Calley Means, a health care entrepreneur, say dramatic changes are needed because of the high levels of chronic disease in the United States. Government agencies have corruptly tolerated or promoted unhealthy diets and dangerous drugs and vaccines, they say.

Means and Kennedy did not respond to requests for comment. Four conservative members of the first Trump health bureaucracy spoke on condition of anonymity. They eagerly welcomed the former president’s return but voiced few opinions about specific policies. Days after last week’s election, RFK Jr. announced that the Trump administration would immediately fire and replace 600 National Institutes of Health officials. He set up a website seeking crowdsourced nominees for federal appointments, with a host of vaccination foes and chiropractors among the early favorites.

At meetings last week at Mar-a-Lago involving Elon Musk, Tucker Carlson, Donald Trump Jr., Kennedy, and Means, according to Politico, some candidates for leading health posts included Jay Bhattacharya, a Stanford University scientist who opposed covid lockdowns; Florida Surgeon General Joseph Ladapo, who opposes mRNA covid vaccines and rejected well-established disease control practices during a measles outbreak; Johns Hopkins University surgeon Marty Makary; and Means’ sister, Stanford-trained surgeon and health guru Casey Means.

All are mavericks of a sort, though their ideas are not uniform. Yet the notion that they could elbow aside a century of science-based health policy is profoundly troubling to many health professionals. They see Kennedy’s presence at the heart of the Trump transition as a triumph of the “medical freedom” movement, which arose in opposition to the Progressive Era idea that experts should guide health care policy and practices.

It could represent a turning away from the expectation that mainstream doctors be respected for their specialized knowledge, said Howard Markel, an emeritus professor of pediatrics and history at the University of Michigan, who began his clinical career treating AIDS patients and ended it after suffering a yearlong bout of long covid.

“We’ve gone back to the idea of ‘every man his own doctor,’” he said, referring to a phrase that gained currency in the 19th century. It was a bad idea then and it’s even worse now, he said.

“What does that do to the morale of scientists?” Markel asked. The public health agencies, largely a post-WWII legacy, are “remarkable institutions, but you can screw up these systems, not just by defunding them but by deflating the true patriots who work in them.”

FDA Commissioner Robert Califf told a conference on Nov. 12 that he worried about mass firings at the FDA. “I’m biased, but I feel like the FDA is sort of at peak performance right now,” he said. At a conference the next day, CDC Director Mandy Cohen reminded listeners of the horrors of vaccine-preventable diseases like measles and polio. “I don’t want to have to see us go backward in order to remind ourselves that vaccines work,” she said.

Exodus From the Agencies?

With uncertainty over the direction of their agencies, many older scientists at the NIH, FDA, and Centers for Disease Control and Prevention are considering retirement, said a senior NIH scientist who spoke on the condition of anonymity for fear of losing his job.

“Everybody I talk to sort of takes a deep breath and says, ‘It doesn’t look good,’” the official said.

“I hear of many people getting CVs ready,” said Arthur Caplan, a professor of bioethics at New York University. They include two of his former students who now work at the FDA, Caplan said.

Others, such as Georges Benjamin, executive director of the American Public Health Association, have voiced wait-and-see attitudes. “We worked with the Trump administration last time. There were times things worked reasonably well,” he said, “and times when things were chaotic, particularly during covid.” Any wholesale deregulation efforts in public health would be politically risky for Trump, he said, because when administrations “screw things up, people get sick and die.”

At the FDA, at least, “it’s very hard to make seismic changes,” former FDA chief counsel Dan Troy said.

But the administration could score easy libertarian-tinged wins by, for example, telling its new FDA chief to reverse the agency’s refusal to approve the psychedelic drug MDMA from the company Lykos. Access to psychedelics to treat post-traumatic stress disorder has grabbed the interest of many veterans. Vitamins and supplements, already only lightly regulated, will probably get even more of a free pass from the next Trump FDA.

‘Medical Freedom’ or ‘Nanny State‘

Trump’s health influencers are not monolithic. Analysts see potential clashes among Kennedy, Musk, and more traditional GOP voices. Casey Means, a “holistic” MD at the center of Kennedy’s “Make America Healthy Again” team, calls for the government to cut ties with industry and remove sugar, processed food, and toxic substances from American diets. Republicans lampooned such policies as exemplifying a “nanny state” when Mike Bloomberg promoted them as mayor of New York City.

Both the libertarian and “medical freedom” wings oppose aspects of regulation, but Silicon Valley biotech supporters of Trump, like Samuel Hammond of the Foundation for American Innovation, have pressed the agency to speed drug and device approvals, while Kennedy’s team says the FDA and other agencies have been “captured” by industry, resulting in dangerous and unnecessary drugs, vaccines, and devices on the market.

Kennedy and Casey Means want to end industry user fees that pay for drug and device rules and support nearly half the FDA’s $7.2 billion budget. It’s unclear whether Congress would make up the shortfall at a time when Trump and Musk have vowed to slash government programs. User fees are set by laws Congress passes every five years, most recently in 2022.

The industry supports the user-fee system, which bolsters FDA staffing and speeds product approvals. Writing new rules “requires an enormous amount of time, effort, energy, and collaboration” by FDA staff, Troy said. Policy changes made through informal “guidance” alone are not binding, he added.

Kennedy and the Means siblings have suggested overhauling agricultural policies so that they incentivize the cultivation of organic vegetables instead of industrial corn and soy, but “I don’t think they’ll be very influential in that area,” Caplan said. “Big Ag is a powerful entrenched industry, and they aren’t interested in changing.”

“There’s a fine line between the libertarian impulse of the ‘medical freedom’ types and advocating a reformation of American bodies, which is definitely ‘nanny state’ territory,” said historian Robert Johnston of the University of Illinois-Chicago.

Specific federal agencies are likely to face major changes. Republicans want to trim the NIH’s 27 research institutes and centers to 15, slashing Anthony Fauci’s legacy by splitting the National Institute of Allergy and Infectious Diseases, which he led for 38 years, into two or three pieces.

Numerous past attempts to slim down the NIH have failed in the face of campaigns by patients, researchers, and doctors. GOP lawmakers have advocated substantial cuts to the CDC budget in recent years, including an end to funding gun violence, climate change, and health equity research. If carried out, Project 2025, a policy blueprint from the conservative Heritage Foundation, would divide the agency into data-collecting and health-promoting arms. The CDC has limited clout in Washington, although former CDC directors and public health officials are defending its value.

“It would be surprising if CDC wasn’t on the radar” for potential change, said Anne Schuchat, a former principal deputy director of the agency, who retired in 2021.

The CDC’s workforce is “very employable” and might start to look for other work if “their area of focus is going to be either cut or changed,” she said.

Kennedy’s attacks on HHS and its agencies as corrupted tools of the drug industry, and his demands that the FDA allow access to scientifically controversial drugs, are closely reminiscent of the 1970s campaign by conservative champions of Laetrile, a dangerous and ineffective apricot-pit derivative touted as a cancer treatment. Just as Kennedy championed off-patent drugs like ivermectin and hydroxychloroquine to treat covid, Laetrile’s defenders claimed that the FDA and a profit-seeking industry were conspiring to suppress a cheaper alternative.

The public and industry have often been skeptical of health regulatory agencies over the decades, Grossman said. The agencies succeed best when they are called in to fix things — particularly after bad medicine kills or damages children, he said.

The 1902 Biologics Control Act, which created the NIH’s forerunner, was enacted in response to smallpox vaccine contamination that killed at least nine children in Camden, New Jersey. Child poisonings linked to the antifreeze solvent for a sulfa drug prompted the modern FDA’s creation in 1938. The agency, in 1962, acquired the power to demand evidence of safety and efficacy before the marketing of drugs after the thalidomide disaster, in which children of pregnant women taking the anti-nausea drug were born with terribly malformed limbs.

If vaccination rates plummet and measles and whooping cough outbreaks proliferate, babies could die or suffer brain damage. “It won’t be harmless for the administration to broadly attack public health,” said Alfredo Morabia, a professor of epidemiology at Columbia University and the editor-in-chief of the American Journal of Public Health. “It would be like taking away your house insurance.”

Sam Whitehead, Stephanie Armour, and David Hilzenrath contributed to this report.

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If you bring a baby into the Hurley Children’s Center clinic in downtown Flint, Michigan, Mona Hanna will find you. The pediatrician, who gained national prominence for helping uncover the city’s water crisis in 2015, strode across the waiting room in her white lab coat, eyes laser-focused on the chubby baby in the lap of an unsuspecting parent.

“Hi! I’m Dr. Mona!” she said warmly. “Any chance you guys live in Flint?” She learned the family is from neighboring Grand Blanc.

“That’s so sad!” Hanna said. “You should move to Flint! And have another baby! And you could be part of the Rx Kids program!” The parents chuckled politely. But the doctor was not kidding.

Billed as the first-ever citywide cash aid program for pregnant moms and babies, Rx Kids gives Flint residents $1,500 mid-pregnancy, and $500 each month for the baby’s first year. There are no strings attached. No income limits. And it’s universal; nearly every baby born since the program launched in January is enrolled.

Parents who bring their babies in for checkups at this clinic rattle off the ways the money has helped, from the cribs, diapers, clothes, and wipes they’ve bought to how it’s “kept them afloat” during maternity leave or provided crucial income when a spouse died.

But the true goal of Rx Kids goes far beyond Flint, as Hanna acknowledged, scooping up one of the Rx Kids babies in an exam room. “Do you think we should do this for babies everywhere? What do you think?” she asked, cooing. The baby gurgled happily, smiling. “That was an affirmative yes.”

Cash Payments as a Tool To Reduce Child Poverty

Many other countries, including Austria, Belgium, Canada, France, Germany, Ireland, Norway, Sweden, and the United Kingdom, already offer a child cash benefit. The U.S. essentially did, too, during the coronavirus pandemic: The 2021 expanded child tax credit gave low- and middle-income families (including those previously excluded because of insufficient income) hundreds of dollars per kid in direct, monthly payments for six months.

The child poverty rate fell to a historic low. But the expanded program expired at the end of 2021 and Congress did not renew it. The child poverty rate went back up.

For Luke Shaefer, director of the Poverty Solutions initiative at the University of Michigan’s Ford School of Public Policy and a longtime advocate of child cash benefits, it was “the most brutal day” of his career.

Soon after, he got an email from Hanna asking if he wanted to collaborate on the program that would become Rx Kids. The program’s goals go beyond cash aid for Michigan families: It is also aimed at getting donors, lawmakers, and voters excited about how child cash benefits could help their communities.

The list of the recently converted includes Republican state Sen. John Damoose, who has become an outspoken advocate for expanding Rx Kids. Referring to himself as “a pro-life person,” Damoose said, “I sure as heck better be concerned about making it easier for mothers to make the decision to have their children.” He said the Republican Party needs to get serious about supporting programs like Rx Kids. “We’ve been accused for years about being pro-birth, not pro-life. And I think that’s not without merit. We need to put our money where our mouth is and support these children and support their mothers.”

Already, what once seemed like a moon shot is gaining traction: Shaefer and Hanna say their communications with Vice President Kamala Harris’ presidential campaign helped shape Harris’ “baby bonus” proposal. President-elect Donald Trump’s campaign also supported expanding the child tax credit.

Meanwhile, Michigan has budgeted some $20 million in state Temporary Assistance for Needy Families cash to partially fund an expansion of Rx Kids to a short list of communities, if those areas can raise local matching funds. Those areas include rural communities like Michigan’s remote eastern Upper Peninsula, part of which is in Damoose’s district. “We want to make the tent as big as possible,” Hanna said.

But some Upper Peninsula health officials were initially wary. Each new Rx Kids community will need to raise millions of dollars in private donations to start and sustain the program in their community. “It could be a good thing,” Leann Espinoza, maternal-infant health program manager for the eastern Upper Peninsula, said in August. “But I’m not getting my hopes up. I know that sounds terrible.”

Upper Peninsula Families ‘Fall Through the Cracks’

In the wood-paneled rec room of the Clark Township Community Center, Espinoza broke the news to her team this summer: Rx Kids is not a program the eastern Upper Peninsula will be able to fund on its own.

It’s about “$3 million that we would need to raise,” she said, looking at three other LMAS District Health Department staff members.

Tonya Winberg, the public health nurse for Mackinac County, looked stunned. “It’s just, where does that $3 million come from?” Winberg asked. Other potential Rx Kids expansion sites, like Kalamazoo, have wealthy private foundations that can fund the program. The eastern Upper Peninsula does not.

“And how do we sustain it?” Espinoza added. “We hate to start programs, and then the funding is gone and we have to tell people, ‘It’s not here anymore; we can’t do it anymore.’”

The ruggedly beautiful and densely forested Upper Peninsula is used to feeling forgotten. There’s a running joke about how often it’s mislabeled as Canada or Wisconsin on maps. It has about a third of Michigan’s land mass, but just 3% of its residents. The sheer scale and sparse population mean options for food, housing, and child care are limited. Poverty rates are higher than the state average in much of Espinoza’s territory, and the region has some of the highest rates of newborns suffering from prebirth drug exposure in the state, according to the state health department.

At the community center, Espinoza and her colleagues start listing all the ways Rx Kids would be a lifesaver for families in the Upper Peninsula, many of whom have some income and some resources but “don’t make enough to make it,” Espinoza said. “The fall-through-the-cracks families. And those are the ones that I really, really, really think this program would benefit, especially up here.”

Espinoza’s next meeting was with one of those families. Jessica Kline and her 18-month-old daughter, Aurora, live in Munising, a tourist town on Lake Superior. “She’s got a big personality, and her hair is red, so she came with a warning label,” Kline said of her daughter, laughing.

Aurora is a tiny force, speeding around the family’s apartment, unfazed by the nasal tube that connects her to an oxygen machine. She was born early, at just 24 weeks gestation, weighing less than 2 pounds. No hospital in the Upper Peninsula was equipped to care for a preemie that young. So Aurora and her parents spent seven months at a hospital in Ann Arbor, five hours south of their home. “We didn’t have a reliable vehicle,” Kline said. “We didn’t have a source of income.” Hospital social services provided $19 a day for food, which Kline would save up to buy supplies for Aurora.

When they finally got Aurora home to the Upper Peninsula, their house had been vandalized, the copper pipes stripped out. Espinoza’s team helped them find housing, and drove them to get groceries. Every day is a series of small battles, from finding the medical supplies Aurora needs to figuring out how to get to a revolving door of specialists hundreds of miles away. Still, Aurora’s dad has a job in town. They’ve got family nearby. They’re making it work, Kline said.

But having a program like Rx Kids could have made a huge difference in her daughter’s first year. “Five hundred dollars a month would have been enough to actually be able to get ourselves on our feet,” she said.

After Espinoza left Kline’s apartment, she drove south to her office in Manistique. It was late. Everyone else had gone home. Espinoza sat at her desk, trying to be pragmatic. She knows Rx Kids would not magically solve the lack of child care and housing and all the other things you need to break the cycle of poverty. But it would fix Kline’s car. It would help.

There will undoubtedly be critics, Espinoza said — people who believe parents will just use this money to buy drugs. “‘What did they do to earn it?’” she imagined them saying. “‘You’re just giving them free money, and they didn’t do anything to get it?’ Because they don’t understand. They don’t understand the barriers. They don’t understand that sometimes the choice isn’t always yours. Like, I’ve talked to moms who desperately want to go to work, and they want to support their family, but there’s no child care. And so they have no other choice.”

Espinoza recently got an update from Rx Kids’ Hanna: Largely because of private foundations outside the Upper Peninsula, the program has raised enough money to fund a “perinatal” version of Rx Kids for five counties in the eastern Upper Peninsula. The perinatal program would provide the $1,500 payment mid-pregnancy, plus $500 a month for a baby’s first three months, rather than the full year. “But the goal really is the full program, so we are still raising money,” Hanna said via email.

“I think it’s fantastic if we even just get the perinatal version to start,” Espinoza said. “That’s more than we had before.”

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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SACRAMENTO, Calif. — California public health officials are dipping into state and federal stockpiles to equip up to 10,000 farmworkers with masks, gloves, goggles, and other safety gear as the state confirms at least 21 human cases of bird flu as of early November. It’s the latest reminder of the state’s struggle to remain prepared amid multibillion-dollar deficits.

Officials said they began distributing more than 2 million pieces of personal protective equipment in late May, four months before the first human case was confirmed in the state. They said they began ramping up coordination with local health officials in April after bird flu was first detected in cattle in the U.S. Bird flu has now been confirmed at more than 270 dairies in central California, and traces were recently detected at a wastewater sampling site in Los Angeles County. Bird flu was also recently detected in a flock of commercial turkeys in Sacramento County.

California is putting a number of lessons from the covid-19 pandemic to use, such as coordinating emergency response with local health officials and tracking infectious diseases through wastewater surveillance, as the state tries to limit the spread of bird flu to humans. It’s striving to maintain an adequate emergency stockpile to withstand the first wave of any new public health disaster without hemorrhaging the state budget.

“We are far better prepared to respond to a pandemic than we were in 2020,” said Amy Palmer, a spokesperson for the Governor’s Office of Emergency Services.

For instance, before the coronavirus struck in 2020, the state’s emergency supplies stockpile was barely big enough to crowd two basketball courts.

By the time California ramped up its pandemic response, it had enough personal protective equipment and other disaster supplies to fill 52 football fields. California spent $15.6 billion on direct pandemic response during the covid crisis years, much of it provided by the federal government.

Today, the stockpile fits into about 12½ football fields, though it can seesaw from month to month.

According to the state, the current stockpile includes 101 million face masks, 26 million more than the 90-day supply recommended by the state’s pandemic preparedness guideline.

That includes 88 million N95 masks, more than the emergency services agency said was needed last year. The high-efficiency masks are considered crucial to protect against airborne viruses such as covid-19.

Although the state is building up its stockpile, Palmer could not say if the additional masks are related to fears of bird flu, only that planners are always working “to keep pace with the current risk environment.”

The state’s goal, Palmer said, is to have “an initial supply during emergencies to allow us the time to secure resources,” whether through the federal government or by buying more.

There is no indication of spread between humans in the recent California bird flu cases, and health officials say public risk remains low. Human transmission of bird flu is among several worst-case scenarios for a new pandemic, alongside the possibility of a resurgent mutant coronavirus; wider international spread of mpox, Marburg virus, or Ebola; or an entirely new virus for which there initially is no immunity or vaccine.

Yet, health officials nationwide have struggled to track bird flu transmission. And California has a history of swinging back and forth on preparedness.

Republican Gov. Arnold Schwarzenegger ordered an increase in California’s pandemic preparedness in 2006 in response to an earlier threat from bird flu. That included three mobile hospitals that could immediately be deployed during disasters.

Gov. Jerry Brown, a Democrat, ended the program in 2011 as state finances went bust. By the time covid struck, the state released 21 million N95 masks, some so old they were past their expiration date.

Now hospitals are required to maintain their own three-month supply of masks, gowns, and other personal protective equipment under a state law passed in 2020. California’s aerosol transmissible disease standard also uniquely requires hospitals and other high-risk workplaces to follow precautions such as using negative pressure isolation rooms and the highest level of protective equipment until more is known about a new pathogen.

“It is difficult to overstate the level of unpreparedness exhibited by hospitals both in and outside of California in dealing with the 2020 outbreak of COVID-19,” according to a legislative analysis. “Harrowing images of nurses walking the corridors of hospitals in makeshift masks and garbage bags became commonplace.”

California Hospital Association spokesperson Jan Emerson-Shea said hospitals “continuously prepare to respond to all types of disasters, including outbreaks of transmissible viruses.”

In addition, Palmer said California has five mobile hospitals acquired from the federal government, though they got little use during the pandemic. She said they have to be maintained, such as making sure pulse oximeters have working batteries.

But, once again, the current deficit has the state trying to strike a balance.

While lawmakers rejected most of Democratic Gov. Gavin Newsom’s $300 million proposed cut to public health funding, the state slashed funding for its stockpile of personal protective equipment by one-third a year ago after it determined that no additional covid-related purchases were necessary, according to the Department of Finance. California eliminated funding this year for eight 53-foot-long trailers that would have moved stockpiled items between warehouses. It’s also cutting nearly $40 million over the next four years from its $175 million disaster stockpile budget.

The state’s preparedness wasn’t good enough for Californians Against Pandemics, which gathered more than 1 million signatures to put a ballot measure before voters in November. The measure would have increased taxes on people with incomes over $5 million and used that money for pandemic prevention and response.

But that effort collapsed after one of its key financial supporters, former cryptocurrency executive Sam Bankman-Fried, was convicted of defrauding customers and investors. In exchange for initiative backers dropping the measure, state officials agreed to broaden the scope of the California Initiative to Advance Precision Medicine, which was created in 2015 to focus on developing new medicines and therapies, to include technologies for preventing another pandemic.

“By harnessing the power of precision medicine, California is moving to the forefront of pandemic preparedness and prevention,” Newsom said at the time.

Rodger Butler, a spokesperson for the state Health and Human Services Agency, said it’s unclear if the precision medicine initiative will receive additional funding.

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

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

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For Native American communities in the Great Plains, data paints a clear picture of the devastation caused by an ongoing syphilis outbreak.

According to the South Dakota Department of Health, 649 cases of syphilis have been documented this year. Of those, 546 were diagnosed among Native Americans, who make up only 9 percent of the state’s population.

“It’s completely preventable and curable, so something has gone horribly wrong that this has occurred,” said Meghan Curry O’Connell, the chief public health officer for the Great Plains Tribal Leaders’ Health Board and a citizen of the Cherokee Nation.

This year, the tribal leaders’ health board asked the U.S. Department of Health and Human Services to declare the outbreak a public health emergency, which could ease access to other resources that tribal leaders asked for, including public health workers, data, national stockpile supplies and funding.

According to the Great Plains Tribal Epidemiology Center, syphilis rates among Native Americans in its region, which covers Iowa, Nebraska, North Dakota and South Dakota, soared by 1,865 percent from 2020 to 2022 — more than 10 times the increase nationwide during the same period. The epidemiology center also found that 1 in 40 Native American babies born in the region in 2022 had a potentially life-threatening syphilis infection.

O’Connell said HHS officials’ response to the Great Plains Tribal Leaders’ Health Board fell short of fulfilling its requests. More recently, the National Indian Health Board also sent a letter to the agency urging it to declare a public health emergency for all tribes in the United States.

Months later, no public health emergency has been declared, and tribal and health leaders are still responding to the outbreak with limited resources.

HHS officials pointed to their work in forming a task force and hosting workshops to guide tribes’ response to the outbreak. But tribal leaders insist they need greater federal investment.

“We know how to address this, but we do need extra support and resources in order to do it,” O’Connell said.

Still, some health officials serving Native American communities say they’re seeing improvement. Natalie Holt, a physician and the chief medical officer for the Great Plains Area Indian Health Service, one of 12 regional divisions of the federal agency responsible for providing health care to Native Americans, said new cases have been declining.

Indian Health Service facilities in the region have averaged more than 1,300 syphilis tests monthly, she said, and cases are down from 93 in January to 31 in October.

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

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Meet Holden Karau: a San Francisco Bay Area software engineer who created an AI tool to help appeal insurance denials.

Her project, Fight Health Insurance, is a labor of love. It draws on her tech expertise and years of experience fighting health insurance: for gender-affirming care, for rehab after getting hit by a car, and even for her dog, Professor Timbit.

An Arm and a Leg host Dan Weissmann talked with Karau about what it took to build the tool, how it works, and what she hopes comes next.

Dan Weissmann@danweissmannHost 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.CreditsEmily PisacretaProducerAdam RaymondaAudio wizardEllen WeissEditorClick to open the TranscriptTranscript: Fight Health Insurance — With Help From AINote: “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–

Let’s start with introductions.

Carolyn: My name is Carolyn DeSimone, and I have a super cute dog. His name is Professor Timbit. He’s a professor because he’s always researching something.

Holden Karau: My name is Holden Caro, and I’m trying to make health insurance suck a little bit less

Dan: Carolyn and Holden are married, and I talked with them in September because listeners had been sending me links to a story in the San Francisco Standard, with the headline “‘Make your health insurance company cry’: One woman’s fight to turn the tables on insurers.”

That woman was Holden. She works in tech, and the story was about a tool she’d built, to help people fight health insurance: It writes appeal letters, using AI of course.

She’s made it available at a web site, “fight health insurance dot com”

I lose count of how many of you sent me that link, but thank you, SO much.

Holden and Carolyn live in San Francisco. I talked to them on Zoom. A local reporter, Lee Romney, helped set up mics for the two of them in their living room.

The bookshelves in the background had — along with books –lots little stuffed creatures. When I squinted, I could see a pikachu.

Holden Karau: So there’s a few Pikachu’s actually. Um, and we have a, we have a stuffed poop. Um, it’s a wombat poop. That’s why it’s square. Here.

Dan: And Lee can’t help commenting when she sees the wombat poop because it’s a brown, plushie cube with a face.

Carolyn: Let me go grab it. I’ll show you.

Dan: Lee can’t help commenting when she sees the wombat poop: it’s a brown, plushy cube, with a face.

Lee Romney: That’s a very regular looking turd.

Carolyn: Wombats have square poops so they don’t roll away.

Lee Romney: Oh, I didn’t know that.

Carolyn: Yeah, they have like special muscles in their buttholes to make square poops.

Dan: This is the most fun zoom I’ve ever been on, actually.

Dan: And we were just getting started.

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 the job we’ve chosen here 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.

As you might imagine, Holden’s decision to create Fight Health Insurance draws on both her significant professional expertise — she’s worked for Google, IBM, Apple, and now Netflix, and has written several technical books about programming —

and her personal experience fighting health insurance– also significant.

And the reserves of anger and cussedness she got from those experiences.

Holden Karau: I try and be a nice person, but health insurance does not bring out the best in me.

Carolyn: I don’t think it brings out the best in anyone.

Holden Karau: Certainly, certainly no one that I know.

Dan: Holden’s gender transition provided lots of experience.

Holden Karau: Being a trans person in America, you have to navigate health insurance.

Dan: For instance, early on, Holden says she learned something that I didn’t understand until I’d been working on this show for a while:

If you get health insurance from your employer, it’s pretty likely that your state’s insurance laws don’t apply to your plan.

Instead, your plan gets regulated by the federal department of Labor, under a federal law called ERISA. Holden knows a LOT about ERISA and had to think for a minute about when she picked it up.

Holden Karau: When did I learn about ERISA? I think I knew what an ERISA plan was from IBM.

Carolyn: Oh yeah, cause IBM got you boobs.

Holden Karau: Yeah. IBM paid for my boobs. Originally I was going to get a tattoo saying like sponsored by, but – I – no.

Dan: Holden says her fighting-insurance game — and those reserves of anger– leveled up in 2019.

Holden Karau: Yeah. When I got hit by a car is when I like started reading health insurance regulations because I didn’t have a lot else to do and it was also really important that I figure it out.

Dan: Holden had been riding a brand-new Vespa. She was on 16th Street in San Francisco’s Mission District. Carolyn picks up the story here…

Carolyn: A woman pulled out of the parking lot of the Safeway to turn left without looking.

Holden Karau: Yeah, across four lanes of traffic.

Dan: Holden says she had two broken wrists, and some broken bones in her legs. It didn’t take long for her to start thinking about medical bills. Even though she was on very strong painkillers.

Holden Karau: I think while I was still on fentanyl, I was thinking about insurance.

Dan:She was thinking, this is gonna be… a lot.

Carolyn: Out of the trauma bay, but possibly not when you were out of the ER, was the first time we thought about, what’s this gonna cost?

Dan: But they say the actual haggling with insurance didn’t start for a few days, when it was time for Holden to leave the hospital. And head to rehab. Her insurance, she says, had a place in mind.

Holden Karau: They really wanted to send me somewhere really, really shitty.

Carolyn: We looked at the reviews of them.

Holden Karau: Yeah. And it’s like, they’re actively being investigated by the state…

Carolyn: …for like hitting their patients with things.

Holden Karau: Yeah. It was like, no, I don’t want to go there.

Dan: Carolyn said she pitched in to help get Holden to a better rehab, but then they say there were battles over how much treatment she’d actually get. By that time, Carolyn says, Holden was ready to go right at it.

Carolyn: Once you got to the rehab, I think you started reading the forms for fun.

Holden Karau: I didn’t have a lot going on at that point, and I was still on opiates, but the opiates were less strong, so my brain was starting to work again.

Carolyn: You got bored.

Holden Karau: Yeah.

Dan: Holden says her brain was working, but not her body. She couldn’t hold a laptop, or really type. Or get out of bed to pick up her phone if it fell to the floor. But even with broken wrists, she was ready to fight for the rehab treatment she needed.

Holden Karau: it ended up working out okay, and part of that was my willingness to just, like, take things to an unreasonable length. I was like, really, I have nothing to lose here, so I will sue you. I am bored.

Dan: Holden says it helped that she could afford a good lawyer.

Especially because there were more fights ahead. She says she had to fight for special crutches – cause she couldn’t use regular ones with broken wrists — and for more physical therapy when she got home.

And there was an epic fight to make sure medical bills didn’t completely devour any settlement from the driver’s car insurance. This was a next-level legal education.

Holden says it took three years to get all the legal issues resolved. And, Meanwhile, she discovered that she’d developed a super-power — or call it a special interest.

She noticed: If someone at a party, say, started talking about a problem they were having with health insurance, she was ready — eager– to take them down the rabbit hole.

Holden Karau: they’d be like, complaining about a thing, and it’s like, oh no, like, yeah, yeah, yeah, this sucks, and they totally do that, but like, there’s actually a thing that you can do, it was like, okay, like, this is a thing that I know how to do. I like helping people

Dan: But conversations at parties weren’t much of an outlet.

Holden Karau: Like, I don’t get invited to a lot of parties, because not a lot of people are like, I would love to hang out with that lady that keeps talking about ERISA regulations or the Affordable Care Act.

Dan: And then, in January of 2023, Holden was talking with a friend at a tech conference.

Holden Karau: He has family that also has perhaps a non standard level of experience with insurance, and so like we were talking about generative AI…

Dan: Generative AI. Chat GPT had been released less than two months before.. Holden and her friend ended up thinking.. .

Holden Karau: You know what, we could use this to actually, like, make the world suck a little less.

Dan: Could use these new generative-AI tools to fight health insurance. Like by having it write appeal letters when claims got denied. An idea was one thing. Making something would take more. Holden used what she knew about herself to make that happen.

Holden Karau: There’s, there’s different kinds of motivation, right? There’s like, uh, deadline driven, uh, programming, which is like when you agree to give a talk at a conference, you’re like, okay, I need to do this by this date. Otherwise I’m going to look really bad in front of a bunch of people. Uh, so I’ll do that a lot, but the other equally strong motivation, I think, is hate. And I hate insurance companies. Because they’ve just like, they’ve been so mean to me and my friends.

Dan: Then, a few months later, another conference provided an opportunity to combine those motivations: A hackathon — a competition where engineers and developers get a limited amount of time to put a project together. .

Holden Karau: I was like, okay, I’m gonna work on this for the hackathon.

Dan: That gave her a deadline: 30 days. Her project came in third.

Holden Karau: which, not fantastic, but, like, not terrible, you know.

Dan: Third out of more than 50. Plus, it worked! Kind of.

Holden Karau: So like it would say things like, this procedure should be covered because of the llama llama virus, and it’s just like, oh, well that, that’s not a real thing, but like, good try, good try, right? And it was like, you know, like, it’s interesting, and like, it kind of sort of works, but it’s also, it’s not great, right?

Dan: Getting to the next stage would require a new approach, and some motivation — more rage — which came from a surprising source.. That’s next…

This episode of An Arm and a Leg is a co-production with KFF Health News. That’s a national nonprofit newsroom producing in-depth journalism about health issues. Their reporters do amazing work — and win all kinds of awards every year. We’re honored to work with them.

So Holden came out of that hackathon with something that kind of worked. Kind of.

Then she says she found herself in a fight on behalf of someone else in her household.

Holden Karau: Timbit, our dog, who’s amazing, I love him, had a bunch of dental work done and the pet health insurance people were jerks about that.

Carolyn: They said he didn’t need anesthesia to have teeth pulled. They rejected the anesthesia. He’s 11 pounds. He can’t be awake during…

Holden Karau: I don’t even know if like, don’t, I don’t know anyone can be awake for that. And so I was like, okay, cool, how can I put the screws to them? Because you were mean to my dog. I’m used to health insurance companies being mean to me to the extent that I’m almost numb to it at this point. But like, my dog is precious and perfect. I read the plan documents because I’m a nerd. And like, this is not, Your obligation, like, you are obligated to do more. You would have to prove that this is not necessary, and I don’t think you can do that.

Dan:Holden says she also read up on state regulations for pet insurance, and let the company know she’d found grounds for some potentially-serious challenges.

Holden Karau: and that, along with, uh, some other, perhaps less than polite words, did result in them changing their opinion about whether or not he should be awake for getting his teeth pulled out.

Dan: Well done. Well done.

Holden Karau: And then it s was like, okay, you know what? Yeah, I should put in the time to finish this, right?

Dan: Finish the tool to fight insurance companies.

Holden Karau: Like, I’ve got this thing that’s like kind of half baked, but I should, I should take this over the finish line. Like, screw these insurance companies.

Dan: To do that, she was going to need some data to train her AI — the technical term is “large language model” — or “model” for short.

Holden Karau: Because the big problem, and part of why we got this like, llama llama virus thing, is like when you don’t have data to train a model, it’s bad, right? It’s like garbage in, garbage out. And this is also part of why like, a lot of large models on the internet are bad, they’re like trained on Reddit..

Dan: Yeah, so they learn HOW people use language. But they don’t learn facts. They’re like a really smart 18 year old who hasn’t done the reading but is good at bullshitting. Because they know what “an answer” sounds like in this context.

Holden needed to train her model on a bunch of factual data for health insurance appeals and denials. And she found it. Thanks to the California Department of Insurance. If your insurance denies a claim, and it’s regulated by the state of California, you can request an independent medical review from the Department of Insurance.

Which decides whether your procedure was medically necessary. Every decision gets published online. Describing the facts. The diagnosis. The procedure. And the reasoning behind the decision.

Holden Karau: And, like, that’s the information that you want, right? You want to know, like, for a diagnosis and procedure, why is this necessary? Why should the insurance company have to cover this?

Dan: And all that information was in this data — for many thousands of appeals, many thousands of decisions.

Holden Karau: I found the independent medical review data. And I was like, okay, cool. I can use this to make the model better.

Dan: Holden started whipping the model into shape. After about six months, she paid a developer to work up a web version — something that you don’t have to be a tech person to actually use. She bought hardware — servers. All told, she thinks she spent maybe ten thousand dollars, plus a year of nights and weekends.

In August of this year, she had something ready to show the world.

She emailed a local reporter who had been writing about health insurance.

Holden Karau: I’m like, this local kid who’s been working on this thing. It seems like it might be, like, kinda on your beat. If not, like, absolutely no stress, but, like, let me know. And if you wanna chat about it, like, I’m happy to jump on my Vespa and like, swing over and I can talk with you about it and show it to you. And, um, and she emailed me back and was like, yeah, that sounds cool.

Dan: What Holden showed that reporter — pretty much what you see now at fight health insurance dot com — isn’t a magic wand. It doesn’t do EVERYTHING for you.

You’ve gotta make a scan of the denial letter from your insurance company, and run it through “optical character recognition” — turn it from an image of text into actual text. Oh, and zap personally-identifiable information — like your name and address — from the document. So none of that gets captured by any machines.

You can also write up a narrative with any details — that’s optional, but seems like a good idea. And you can upload your documents from your insurance company that describe your benefits. That also seems smart.

You feed it everything, and it gives you back a draft of an appeal letter — actually, more than one, so you can pick and choose, and make edits.

So, there’s some homework. And it all still looks kinda early-stage. The site isn’t super-pretty. And you know how early, not-quite-officially-released software gets called a “beta” release? This one says “alpha” — earlier than that.

So, no guarantees. But it’s something.

Holden showed it to that reporter, and the result was the article that a bunch of listeners started sending me.

By the time I talked with Holden and Carolyn, about three weeks later, Holden said about three hundred people had used it. She’d been keeping an eye on how it performed.

Holden Karau: It seems to generate things that look good, right? Which, this is important to me. Um, I also get emails from people saying like, cool, thank you, thanks for doing this, um, so that’s pretty rad.

But like, I assume that you get some of the same stories there’s some people where they reach out, they’re like, Hey, this is my specific situation. Like, what can I do? And it’s often just like, I wish I could help you. But like, this is just completely fucked.

Dan: I do get those, of course. It never gets easier. [And, I should say: If you’ve written me and I haven’t responded, don’t assume it’s because your situation is completely fucked. It’s just as likely that I can’t keep up with my email, but I REALLY APPRECIATE you writing to me, no matter what. I learn so much. Including things that don’t suck, like when a bunch of you wrote to me about Holden and her project.]

When we talked, Holden said she hadn’t gotten much information about whether these appeals were working. Insurance companies generally give themselves a month to respond to appeals. And it hadn’t been that long.

Meanwhile, there was the question of where this project could go next.

Holden Karau: Do I do it for like, more than evenings and weekends?Or do I do it for evenings and weekends? And I don’t, I don’t know what the answer to that is yet.

Dan: Holden had ideas about ways it could earn income — maybe by charging doctors and other providers, but keeping the service free for patients?

When I asked how much it would cost to take Fight Health Insurance to the next level, make it available and useful to — you know, everybody who might need it– and keep it up to date, and keep it reliable and stable — she started thinking, and the numbers kept going up: a hundred thousand, two, four, five, more.

A few weeks later, Holden came to Chicago, where I live, for a conference. I went to meet her! And I got an update from her.

Holden Karau: there’s some people who, who like sent in their appeals and, and things got approved, and that’s pretty awesome. I’m, I’m pretty stoked with that. I guess the, the other thing is like, people seem generally positive and happy. So yeah…

Dan: Thank you for this thing that didn’t exist before.

Holden Karau: when the alternative is just giving up hope, like, this is so much better than just going, like, God damn it.

Dan: She was still puzzling over how Fight Health Insurance could grow. She said when she asked a friend with experience in the startup world for advice about talking with business or venture capital folks, the friend’s response was pretty immediate.

Holden Karau: What are you doing? No, no. They are gonna like, they’re, hm… they’re gonna lead you down the path that you are trying really hard to avoid.

Dan: Charge patients money, maybe harvest their data for who-knows-what icky purposes. Basically turn into another shark.

Holden Karau: This is probably just my naivety, but I really I have this belief that the consumer version should be free always. And so one of the tricks is finding someone that agrees with that, who’s willing to give us money. Because, otherwise, It’s like, nah, it’s cool. But then the second question is, like, is there a way to shift the economics of denials, such that, like, insurance companies, like, it just costs them more to be dicks, right?

Dan: Assuming she finds the right kind of partner, there’s a question of how Fight Health Insurance would earn income to keep itself going.

She’s still interested in the idea of selling a paid version to doctors and other practitioners, and when we talked she’d heard from some folks in that world.

Holden Karau: Of the professionals reaching out, a lot of them were from the mental health field. That’s something where, that’s an area that I feel strongly about. Like, I would not be here if it was not for access to mental health.

Dan: Meanwhile, she says she’s squeezing in about a day a week for the project, in between her full-time job and the rest of her life.

Holden Karau: It’s probably not super healthy. Um, yeah. There’s this whole trading sleep thing, which is, in the long run, not a great bargain.

Dan: So you’ve been thinking, at some point, there’ll be some choices to make.

Holden Karau: Yeah, I mean realistically probably January will be when I know if I can like work on this more full time or not. Otherwise it’ll continue to exist as the thing that I do when I have free time and no one’s looking too closely.

Dan: For now, Holden’s taking things one step at a time.

Holden Karau: One of the other things that I’m reminded of what one of my therapists reminds me of so frequently is that we are not responsible for fixing the world, but we must participate in the world’s healing.

Dan: Yep.

I think that for some of us, our existence is enough, but when we can, I think it’s good to find the small things we can do because otherwise we would do nothing.

Dan: Can I please say, Amen.

If you give Holden’s tool a try, I am SUPER curious to hear how it turns out.

If you do, I should mention: The privacy policy on Holden’s site says that if the enterprise ever, say, gets sold, then whoever buys it could end up with any data you give it.

So Holden actually suggests: maybe create a temporary email address for working with her site. Just in case some shark ends up with this stuff. (It needs AN email to send you its results. The site asks for a name too. You could consider using a fake one.)

We’ll have links to fight health insurance — and to instructions for creating a temporary email address — wherever you’re listening to this.

And we’ll be back in a few weeks with a brand-new episode.

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.

Adam Raymonda is our audio wizard. Our music is by Dave Weiner and Blue Dot Sessions. Gabrielle Healy is our managing editor for audience.

Lynne Johnson is our operations manager. Bea Bosco is our consulting director of operations.

An Arm and a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in-depth journalism about health issues in America and a core program at KFF, an independent source of health policy research, polling, and journalism.

Zach Dyer is senior audio producer at KFF Health News. He’s editorial liaison to this show.

And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor. They allow us to accept tax-exempt donations. You can learn more about INN at INN.org.

Finally, thank you to everybody who supports this show financially. You can join in any time at arm and a leg show, dot com, slash: support. Thank you so much for pitching in if you can — 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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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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In the two counties around nurse practitioner Samantha Marsee’s clinic in rural northeastern Maryland, there’s not a single clinic that provides abortions. And until recently, Marsee herself wasn’t trained to treat patients who wanted to end a pregnancy.

“I didn’t really have a lot of knowledge about abortion care,” she said.

After Roe v. Wade was overturned, she watched state after state ban abortion, and Marsee decided to take part in the first class of a new training program offered by the University of Maryland School of Medicine and the University of Maryland-Baltimore.

Marsee learned how to administer medication abortion pills, procedural abortions, and highly effective birth control methods, including hormonal implants and intrauterine devices.

She cares for patients with all sorts of everyday ailments and health conditions, including pregnancy. “I do have patients who come in for confirmation of pregnancies and then disclose they don’t want to continue with the pregnancy for whatever reason,” Marsee said.

Now, with her new training, she can help.

Expanding the pool of health care providers with reproductive health care skills outside of the state’s urban centers is vital, said Mary Jo Bondy, associate dean of the School of Graduate Studies at the University of Maryland-Baltimore. She helped create the new training program.

In 2022, Maryland lawmakers passed the Abortion Care Access Act, expanding the type of medical care nurse practitioners, physician assistants, and certified nurse-midwives could offer, including abortion, and the training program “prioritized that group,” Bondy said.

Those types of professionals have long provided abortions to rural patients in other states, Bondy said, and “we have proof that receiving this care from an advanced practice clinician is safe.”

As many as 120 health care providers will be trained over the next two years. Some participants have said they are returning to communities that are hostile to abortion rights.

On Nov. 5, voters approved a ballot measure to protect reproductive rights in the Maryland Constitution, by an overwhelming margin, preliminary results show. The state is widely considered a safe haven for patients who live in states with abortion bans. The number of abortions in Maryland increased 29% from 2019 to 2023, driven largely by out-of-state residents. But one training participant, a family physician from the Eastern Shore, said providing abortions makes her concerned for her physical safety and asked not to be identified.

“The rural catchment and politics really drive it either out or at least into the quiet,” she said of abortion availability where she lives. She worries that her employer will question the prescriptions she writes for medication abortion pills and said pharmacists often refuse to give the medication to her patients.

Even in Maryland, pharmacists are allowed to refuse to dispense medication abortion pills.

As more health care providers are trained in abortion care, they need help from the state’s medical schools and health officials to overcome these barriers, the family physician said. She wants help with “access to medication and pushing in some ways the hand of our employers, or normalizing, ‘This is just health care.’”

For Marsee, the next step is to figure out how to let her patients know she can provide abortions. She plans to tell her current patients and hopes they’ll tell others.

“I’m working on a way to let people know that I’m here and can provide it,” Marsee said. “This is a conservative area, so it’s walking that line. I want people to know I’m here, but I don’t want to cause too much outrage and attention.”

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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Este año, California ha dado el último paso para abrir el Medi-Cal, su programa de Medicaid, a todos los residentes que reúnan los requisitos, independientemente de su estatus migratorio.

Es una expansión significativa para un programa de protección social que ya de por sí es masivo.

El gasto anual de Medi-Cal asciende actualmente a $157.000 millones, con los que atiende a unos 15 millones de residentes de bajos ingresos, más de un tercio de los californianos.

De ellos, aproximadamente 1.5 millones son inmigrantes que viven en Estados Unidos sin papeles, y su acceso a servicios de atención médica representa un costo estimado de $6.4 mil millones, según el Departamento de Servicios de Atención Médica.

Estos inmigrantes se han ido sumando al programa poco a poco, a medida que el estado fue eliminando el requisito de residencia legal. Primero, en 2016, se incluyó a los niños. En 2020, a los jóvenes de 19 a 25 años. En 2022, a las personas de 50 años o más. Finalmente, desde enero, a todos los adultos restantes.

Los defensores de los inmigrantes aplauden el aumento de personas inscriptas en el seguro público de California y elogian al estado por haber ampliado Medi-Cal y logrado que la tasa de personas sin cobertura médica bajara a un mínimo histórico de 6.4%.

Sin embargo, los proveedores de servicios de salud y los hospitales advierten que el estado no ha ampliado adecuadamente el número de profesionales ni ha aumentado lo suficiente los pagos de Medi-Cal. Por esta situación, algunos afiliados tienen problemas para encontrar prestadores de salud que los atiendan en plazos adecuados o directamente se quedan sin ninguna atención médica.

“La cobertura no significa necesariamente acceso”, afirmó Isabel Becerra, consejera delegada y presidenta de la Coalición de Centros de Salud Comunitarios del Condado de Orange, durante una cumbre sobre política sanitaria, el 2 de octubre en Los Ángeles. “Existe una escasez de profesionales de salud. Todos estamos luchando por recibir atención médica. Estamos compitiendo entre nosotros para conseguir que los médicos nos atiendan”.

Aunque el estado ha aumentado un 87,5% los pagos de Medi-Cal para la atención primaria, de maternidad y servicios de salud mental respecto de lo que paga Medicare, el seguro privado todavía tiende a pagar más, según la California Legislative Analyst’s Office.

Una iniciativa electoral presentada hace poco podría garantizar que los ingresos procedentes de un impuesto sobre los planes de salud gestionados se destinen a aumentar el pago a los proveedores de asistencia sanitaria que tratan a los pacientes de Medi-Cal.

Pero algunos creen que el próximo capítulo para dar cobertura a los inmigrantes requerirá algo más que Medi-Cal.

En 2022, Joaquín Arámbula, miembro de la Asamblea estatal por el Partido Demócrata, presentó un proyecto de ley en este sentido. Proponía que los aproximadamente 520.000 residentes indocumentados sin seguro que ganaran más del 138% del nivel federal de pobreza pudieran solicitar cobertura sanitaria subvencionada por el estado a través de Covered California, el mercado de seguros de salud estatal. Sin embargo, el proyecto de ley no avanzó en el comité este año.

La nueva entrega de la serie “Faces de Medi-Cal” muestra cómo Medi-Cal ha impactado en la vida de sus nuevos afiliados.

Entre ellos, Vanessa López Zamora, que por fin está recibiendo tratamiento para su hepatitis y cirrosis, pero tiene problemas para ver a un gastroenterólogo cerca de su casa; Douglas López, un trabajador de un parque de atracciones que atribuye la cobertura dental a la mejora de su bienestar; y Daniel García, que sufre de gota, pero ha renunciado a la búsqueda de un proveedor de atención primaria.

Todos ellos hablaron con KFF Health News luego de comenzar a ser beneficiarios de Medi-Cal.

“Empecé a sentirme mal hace mucho tiempo”

En marzo, el estómago de Vanessa López Zamora se había hinchado tanto que parecía que estaba embarazada. Había estado dolorida y vomitando durante días.

López Zamora contó que fue al servicio de urgencias de su localidad, el Kaweah Health Medical Center, pero no había ningún especialista disponible. Así que la mujer, de 31 años, fue trasladada en ambulancia a Adventist Health Bakersfield, a unas 80 millas de su casa en Visalia.

Contó que allí, los médicos le diagnosticaron hepatitis A y C y cirrosis, y le explicaron que eso le había causado lesiones internas en el hígado y el esófago.

Vanessa pasó cuatro días en el hospital y, para recibir tratamiento adicional, la remitieron a un gastroenterólogo, al que puede ir como nueva beneficiaria de Medi-Cal. Esta es una opción que no podía permitirse en el pasado, cuando tenía dolores de estómago y náuseas.

“Ha sido un proceso muy largo porque empecé a sentirme mal hace mucho tiempo”, dijo López Zamora, que trabaja como contable en una emisora de radio local de Visalia, en el valle de San Joaquín. “Mis hijas son muy pequeñas, y si no consigo el tratamiento necesario, no sabré cuánto tiempo me queda”, se lamentó.

López Zamora, que llegó a California desde Ciudad de México cuando tenía 8 años, está agradecida por la atención que recibió inicialmente.

Pero también está frustrada.

El gastroenterólogo al que la derivó el hospital está en Bakersfield y para Zamora es difícil ir: no conduce, y no puede viajar a otra ciudad.

El acceso limitado a especialistas —desde gastroenterólogos hasta cardiólogos— ha sido durante mucho tiempo un desafío para muchos pacientes de Medi-Cal, especialmente los que viven en zonas rurales o en regiones donde hay escasez de proveedores de salud.

El Valle de San Joaquín, donde vive López Zamora, tiene la menor oferta de especialistas del estado, según la California Health Care Foundation.

Michael Bowman, vocero Anthem Blue Cross, el plan de Medi-Cal de López Zamora, dijo en un correo electrónico que Anthem tiene una amplia red de especialistas que atienden a los beneficiarios de Medi-Cal, incluyendo más de 100 gastroenterólogos en un radio de 20 millas alrededor de Visalia.

López Zamora está tratando su cirrosis con medicamentos y dieta, pero en agosto su gastroenterólogo de Bakerfield descubrió signos de una condición precancerosa en el estómago.

Ella dijo que está buscando un especialista que atienda más cerca de su casa. Por ahora, su madre debe tomarse el día en el trabajo para llevarla a las citas médicas. Si no, toma el autobús.

López Zamora intentó utilizar el transporte proporcionado por Medi-Cal, pero se quedó varada en el hospital. Y ha tenido que cambiar dos veces de cita.

“Me llevaron, pero no me pudieron traer de vuelta porque no encontraban un Uber”, explicó.

Un proceso muy sencillo

Medi-Cal proporcionó a Douglas López el tratamiento dental que no podía costear.

En 2022, este hombre de 33 años ganaba el salario mínimo como trabajador de limpieza en un parque de atracciones. El plan de emergencia de Medi-Cal en el que se había anotado sólo cubría extracciones de urgencia.

Ese año, López experimentó un dolor agudo en las muelas de atrás cuando comía sus queridas bolitas de caramelo de coco y tamarindo de su Guatemala natal.

Un dentista le dijo que necesitaba varias obturaciones y tres endodoncias. Empezó el tratamiento, pero las facturas se fueron encareciendo: $150 la primera sesión, luego $200 y después $300.

“No podía permitírmelo”, recordó López, que vive en Fullerton. “Tenía que pagar el alquiler y la comida”.

Preocupado por perder los dientes, dejó de comer cualquier cosa que le causara dolor.

En enero, cuando el estado amplió la elegibilidad para el seguro a los residentes sin papeles de entre 26 y 49 años, el condado de Orange inscribió automáticamente a López en el plan Medi-Cal de Molina Healthcare. La cobertura transformó su atención, dijo.

Desde entonces, ya vio a un dentista seis veces. Le hicieron una limpieza, tres endodoncias, dos obturaciones y radiografías. Y Medi-Cal ha pagado la factura.

La experiencia de López contrasta con la de muchos otros beneficiarios, que luchan por obtener la atención que necesitan. El Centro de Investigación de Políticas de Salud de UCLA descubrió que el 21% de los dentistas de California vieron pacientes de Medi-Cal de todas las edades, según datos de 2019 a 2021.

Sin embargo, a menudo esos dentistas limitan el número de pacientes de Medi-Cal que reciben; entonces, solo el 15% de los adultos inscritos podrían recibir atención dental en un año determinado.

A López Medi-Cal lo ha ayudado. “Fue un proceso muy sencillo. Estaba muy emocionado porque podía buscar un dentista”, dijo. “Y mi miedo a perder los dientes por no recibir tratamiento desapareció”.

“Algo que ni siquiera puedes usar”

El año pasado, el dolor punzante en el brazo y en el pie que sufría Daniel García se agravó tanto que el hombre de 39 años fue una sala de emergencias.

García padece gota, un tipo de artritis inflamatoria que puede causarle un intenso dolor e hinchazón en las articulaciones. Cuando este año pudo tener la cobertura de Medi-Cal, pensó que por fin podría ir al médico para recibir tratamiento.

Pero el residente del condado de Los Ángeles dijo que no ha sido capaz de encontrar un proveedor de atención primaria que acepte tomar su seguro de Molina Healthcare.

“Es frustrante porque tienes algo que ni siquiera puedes usar”, dijo García, quien tampoco ha podido hacerse un examen físico anual. “He llamado y me dicen que no aceptan mi seguro”.

Molina declinó hacer comentarios sobre el caso de García y no respondió a preguntas sobre su red de atención primaria.

En California, casi 6 millones de personas viven en un total de 611 áreas donde escasea la atención primaria, según un análisis de KFF, que descubrió que el estado necesitaría sumar 881 profesionales para cerrar esta brecha.

García, trabajador de la construcción, dijo que leyó que podía controlar su artritis cambiando sus hábitos alimentarios. Ahora come más sano y ha reducido el consumo de azúcar y de Coca-Cola. En cuanto al dolor, lo alivia con ibuprofeno. Ha renunciado a buscar un proveedor de salud.

Mantener a los pacientes fuera de las salas de emergencias, que pueden ser hasta 12 veces más costosas que la atención primaria, es uno de los argumentos a favor de la expansión de Medi-Cal.

Estudios han demostrado que ampliar la cobertura de salud no solo reduce la cantidad de visitas a emergencias, sino que también aumenta el uso de atención preventiva por parte de los pacientes, según Drishti Pillai, directora de políticas de salud para inmigrantes en KFF.

“Esto puede ayudar a ahorrar costos de salud, porque no se deja las enfermedades sin atención durante mucho tiempo, lo que podría hacer que su tratamiento se vuelva más complejo y costoso”, explicó Pillai.

Esta historia fue producida por Kaiser Health News, que publica California Healthline, un servicio editorialmente independiente de la California Health Care Foundation.

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

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KFF Health News has sued the U.S. Department of Health and Human Services Office of Inspector General to compel it to release a range of Medicare Advantage health plan audits and other financial records.

The suit, filed Nov. 12 in U.S. District Court in San Francisco under the Freedom of Information Act, or FOIA, seeks documents from the HHS inspector general’s office, which acts as a watchdog over federal health insurance programs run by the Centers for Medicare & Medicaid Services.

The suit asks for correspondence and other records of contact between HHS officials or their representatives and Medicare Advantage organizations concerning overpayment audit findings and potential financial penalties.

It also seeks records reflecting communication between HHS and CMS officials regarding the government’s policies for recovering overpayments discovered during Medicare Advantage audits, including a controversial decision in January 2023 to limit dollar recoveries for audits dating back a decade or more.

Additionally, the suit seeks copies of government contracts awarded to outside firms that have conducted Medicare Advantage audits, including budgets and performance evaluations, dating to 2020. In these audits, reviewers take a sample of 200 patients from a health plan and determine whether medical records support the diagnoses the government paid health plans to treat.

KFF Health News requested the records in August, but, more than two months later, “no documents, responsive or otherwise, have been produced,” the suit says.

Sam Cate-Gumpert, an attorney with Davis Wright Tremaine, which is representing KFF Health News pro bono in the case, said the information is “critically important to public oversight of government misspending.”

According to the suit, the inspector general’s office has audited the Medicare Advantage program more than three dozen times since 2019, revealing billions of dollars in overpayments.

But government officials have not recouped the overcharges, according to the suit.

The HHS Office of Inspector General “has left taxpayers footing the bill for billions of dollars in overpayments — even though HHS OIG’s primary purpose is to combat fraud and waste in Medicare and other federally funded health programs,” the suit alleges.

“In fact, taxpayers have been forced to pay for the Medicare Advantage program’s wasteful spending twice — first, because of the program itself, and second, because of the costs of the audits, which the government spends millions of dollars to conduct,” according to the suit.

Medicare Advantage, mostly run by private insurance companies, has enrolled more than 33 million seniors and people with disabilities, more than half of people on Medicare.

But the program has faced criticism that it costs billions of dollars more than it should with research showing that many health plans exaggerate how sick patients are to boost payments.

A FOIA lawsuit filed by KFF Health News in September 2019 prompted CMS to release summaries of 90 Medicare Advantage audits revealing millions of dollars in overpayments. As part of a settlement, CMS paid $63,000 in KFF Health News’ legal fees, though it did not admit to wrongfully withholding the records.

The HHS Office of Inspector General had no immediate comment on the suit.

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Health researchers are noticing a growing problem in American pregnancies: more cases of blood pressure so high it can be deadly for the parent and baby.

U.S. rates of newly developed and chronic maternal high blood pressure skyrocketed from 2007 through 2019, and researchers say they haven’t slowed down. Hospitals are working to adjust their standards of care to match best practices.

Sara McGinnis died as a result of her pregnancy in 2018. Her Kalispell, Montana, medical team didn’t recognize her symptoms of rising high blood pressure: a severe headache, swollen body and fatigue beyond anything she’d experienced in her first pregnancy. She suffered a massive stroke and seizure late in pregnancy and never got to meet her son, who survived an emergency delivery.

McGinnis had eclampsia, a condition typically characterized by seizures late in pregnancy. The severe and sometimes deadly pregnancy complication generally develops from persistent high blood pressure. Rising blood pressure makes the heart work in overdrive, which damages organs along the way.

One reason for the big increase in cases is that more doctors are looking out for the condition. But that’s not enough to explain the increase in the nation’s overall maternal death rate.

Lifestyle and genetic factors play a role, but physician and health researcher Natalie Cameron, with Northwestern University’s Feinberg School of Medicine, said people who don’t have risk factors going into pregnancy are also getting sick more often. More research is needed to understand why.

“Pregnancy is a natural stress test. It’s unmasking this risk that was there all the time,” Cameron said. “And there’s a lot we don’t know.”

The federal government has worked for years to expand training in screening and treatment for severe high blood pressure in pregnancy. The nation’s best-practice guidelines go back to 2015.

Last year, the federal government boosted funding for training to expand implementation of best practices.

“So much of the disparity in this space is about women’s voices not being heard,” said Carole Johnson, head of the federal agency charged with improving access to health care.

But it takes time for hospitals to incorporate those kinds of changes, researchers said.

Take Montana, for example, which last year became one of 35 states to implement the federal patient safety guidelines. That year, more than two-thirds of hospitals in the state provided patients with timely care. Just over half of hospitals did so before the training.

Some hospitals had treatment plans for high blood pressure in pregnancy but found their doctors’ use was “hit or miss.” One health system found that even the way nurses checked pregnant patients’ blood pressure varied.

Wanda Nicholson, who chairs the independent U.S. Preventive Services Task Force, said blood pressure in pregnancy “can change in a matter of days, or in a 24-hour period.”

That’s why, she said, consistent monitoring for high blood pressure is key to keeping people safe.

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As Nov. 5 approaches and the struggle for control of the U.S. House reaches a fever pitch, Democrats are doing everything they can to tie their Republican opponents to their antiabortion voting records. Some Republican candidates, meanwhile, seem to be softening their positions. And political analysts say it’s part of a larger trend playing out nationwide, up and down the ballot.

“The politics of abortion and reproductive health can get voters to participate at higher rates,” said David McCuan, a political science professor at Sonoma State University. “Republicans have to moderate their stance if they’re going to be in the battle.”

After all, polls show most voters support restoring abortion rights overturned in 2022 by the Supreme Court. Aggressive ads are going up in competitive districts where Democrats see an opportunity to take control of the House by engaging voters who might not vote straight-ticket — or at all.

In New York, Democrat Josh Riley blasted Republican incumbent Marcus J. Molinaro in a 30-second ad for voting against abortion rights 13 times. Next door in New Jersey, Democratic hopeful Sue Altman called out Republican opponent Tom Kean Jr. for a “secret antiabortion agenda.” And in California, Democrat Will Rollins denounced Republican rival “Ken Calvert and MAGA extremists” for backing a national abortion ban.

Meanwhile, in March, shortly after her primary, Rep. Michelle Steel (R-Calif.) removed her support for a blanket abortion ban — the Life at Conception Act — saying it could create confusion because the bill could threaten in vitro fertilization. Following news reports about her reversal, the Orange County-area Republican released an ad in which she shared that she had used IVF and reiterated her support for the procedure.

On the campaign trail, Steel has said she supports exceptions to abortion bans in cases of rape, incest, and in which the mother’s health or life is at risk, a departure from bills she previously supported.

“What we all need to do is to make sure we look at her record, and that record is contrary to what she’s putting out there in her ads,” Steel’s Democratic challenger, Derek Tran, told me.

The Steel and Calvert campaigns told KFF Health News that their candidates oppose a national abortion ban. Calvert, who last backed a 20-week abortion ban in 2017, issued a statement saying the issue is best left to states.

Tim Rosales, a political strategist who has represented Republican candidates, said incumbents shouldn’t get heat for changing their minds over time.

Meanwhile, Rolling Stone reported in March that Rep. Don Bacon (R-Neb.) had deleted antiabortion endorsements from his website. Arizona Republican incumbent Rep. David Schweikert said he opposed a state abortion ban, even though he had co-sponsored a national ban six times.

And vice-presidential candidate JD Vance removed his antiabortion stance from his website the month former president Donald Trump selected him as his running mate.

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More than four years ago, former President Donald Trump’s administration accelerated the development and rollout of the covid-19 vaccine. The project, dubbed Operation Warp Speed, likely saved millions of lives. But a substantial number of Republican voters now identify as vaccine skeptics — and Trump rarely mentions what’s considered one of the great public health accomplishments in recent memory.

“The Republicans don’t want to claim it,” Trump told an interviewer in late September.

Instead, on at least 17 occasions this year, Trump has promised to cut funding to schools that mandate vaccines. Campaign spokespeople have previously said that pledge would apply only to schools with covid mandates. But speeches reviewed by KFF Health News included no such distinction — raising the possibility Trump would also target vaccination rules for common, potentially lethal childhood diseases like polio and measles.

The Trump campaign did not respond to requests for comment on this article.

Trump has presided over a landslide shift in his party’s views on vaccines, reflected this campaign season in false claims by Republican candidates during the primaries and puzzling conspiracies from prominent conservative voices. Republicans increasingly express worry about the risks of vaccines. A September 2023 poll from Politico and Morning Consult showed a narrow majority of those voters cared more about the risks than the benefits of getting inoculated.

A surge in anti-vaccine policy in statehouses has followed the rhetoric. Boston University political scientist Matt Motta, who tracks public health policy, said preliminary data shows that states enacted at least 42 anti-vaccine bills in 2023 — nearly a ninefold surge since 2019.

In some states, it has the look of a crusade: The 2024 Texas GOP platform, for example, proposes a ban on mRNA technology, the innovation behind some covid-19 vaccines that scientists believe could have significant applications for cancer care.

Last month, Trump made an appeal to anti-vaccine voters by landing the endorsement of Robert F. Kennedy Jr., one of the nation’s most prominent vaccine skeptics — and appointing him to his transition team. In a recent tour with former Fox News broadcaster Tucker Carlson, Kennedy said he was “going to be deeply involved in helping to choose the people who run FDA, NIH, and CDC.”

Trump’s outreach can be more discreet: He recently met with a delegation of vaccine-skeptical activists — including one group pushing an end to mandates and certain types of vaccines — at his New Jersey golf club; the discussion was publicized by the conservative blog “Gateway Pundit.”

Trump has options in advancing anti-vaccine goals as president, such as by sowing further doubt and undermining the federal government’s ability to make vaccine recommendations. He has promised to appoint Kennedy, along with “top experts,” to a panel exploring chronic diseases, some of which Kennedy’s nonprofit has linked to inoculations. “Nobody’s done more” to advocate for “the health of our families and our children,” Trump declared at a rally accepting Kennedy’s endorsement.

Still, it’s hard to tell how Trump’s most frequently made proposal — defunding schools that mandate vaccinations — would translate into action, said Judith Winston, former general counsel of the Department of Education during the Obama administration.

Currently, the Department of Education lacks the power to turn off public school funding all at once, she said — meaning a second Trump administration would have to take away money program by program.

And the legal basis for such a move isn’t clear. “I am unaware of any federal law that mandates school districts either provide or not provide a vaccine,” Winston said, adding it would probably require congressional action.

All 50 states have a vaccine requirement tied to school attendance.

Trump’s outreach to anti-vaccine constituencies comes as vaccine hesitancy increases and preventable disease surges. This summer, Oregon experienced its worst outbreak of measles since 1991.

The situation could get worse, said Tom Frieden, a former director of the Centers for Disease Control and Prevention: In the Nineties, during a time when vaccine skepticism also proliferated, the U.S. saw thousands of measles cases. According to the CDC, we haven’t yet returned to those bad old days — but the number of measles cases recorded this year is already quadruple that of last year.

“It was highly disruptive,” he said. “Many children who had measles ended up with hearing problems or cognitive problems that were lifelong. A small number died in this country.”

Worldwide, the disease killed over 100,000 in 2022, mostly among children under age 5, according to the World Health Organization.

Polling shows a substantial minority of Americans, concentrated in the Republican Party, hold vaccine-skeptical positions, said Harvard professor and health politics expert Robert Blendon. And skepticism about covid vaccines is blossoming into suspicion of vaccines generally among that group, he said. “It follows from this rebellion against the covid vaccine mandates.”

Vaccine opposition has divided the GOP. Florida Gov. Ron DeSantis made opposition to vaccines a core part of his ill-fated campaign for the GOP presidential nomination. In states such as Wyoming and Missouri, pitched primary campaigns centered on anti-vaccine themes this year.

Bob Onder, a physician and Republican candidate for Congress in Missouri, was accused in Facebook ads placed by his top opponent of taking millions from pharmaceutical companies to test vaccines. “He profited from our pain,” one ad said. “You suffered the consequences.”

Onder “has never done covid vaccine research” and opposes covid vaccine mandates, his campaign manager, Charley Lovett, told KFF Health News. (Lovett said Onder “conducted” one study sponsored by AstraZeneca on preventing covid in high-risk patients using monoclonal antibodies, not vaccines.)

Onder won the Republican primary, but his vaccine-disparaging opponent still scored just over 37% of the vote.

Anti-vaccine candidates typically become anti-vaccine policymakers. The impact can be seen in Texas, where vaccine politics were once a bipartisan matter. According to researchers, from 2009 to 2019, legislators there passed 19 pro-vaccine bills, such as a measure allowing pharmacists to administer immunizations.

But that consensus began to shift toward the end of the decade. Small groups, often nurtured on Facebook, made their influence felt. One such group, Texans for Vaccine Choice, spurred testimony before the state legislature in 2021 and targeted pro-immunization legislators, some of whom fell in their GOP primaries.

Misinformation has fueled the anti-vaccine turn in Texas, alongside traditional conservative attitudes about individual autonomy, said Summer Wise, a former executive committee member of the state’s Republican Party — particularly misconceptions about the use of fetal cells in vaccine development; falsified research about a link between vaccines and autism; and conspiracy theories about Bill Gates, the billionaire philanthropist who has championed vaccination.

“Politicians see vaccines as an easy foil to propagate fear among the electorate, which can then be leveraged and directed to control a voting bloc,” Wise said.

In addition to calling for a ban on mRNA technology, the Texas GOP’s 2024 platform features a laundry list of policies that could undermine vaccination, including allowing medical residents and physicians the ability to opt out of administering shots for religious reasons. It also calls for enshrining a patient’s ability to opt out of vaccine mandates in the state’s Bill of Rights.

Nationally, anti-immunization policies could take an aggressive turn under a second Trump administration.

Roger Severino, formerly head of the Department of Health and Human Services’ Office of Civil Rights and now with the Heritage Foundation, penned the health agency section of Project 2025, the Heritage Foundation-led initiative to plan for a Republican administration.

Among other ideas, the document proposes clipping CDC authority to issue vaccine or quarantine guidance of a “prescriptive” nature, targeted at schools or elsewhere.

A spokesperson for the Heritage Foundation noted Severino has said the agency’s credibility has been hurt, and it has a burden to explain “all the vaccines on the schedule being taken in combination.”

The proposal misunderstands CDC’s history and powers, said Lawrence Gostin, a public health law professor at Georgetown University. The agency “rarely if ever” makes binding recommendations, he said.

“When the next pandemic hits, we will look to CDC to offer guidance based on the best-known evidence,” he said. “We don’t want a disempowered agency in a public health emergency.”

Some Republican intellectuals have spun dystopian visions surrounding vaccines. Take “Dawn’s Early Light,” a yet-to-be-published book by Heritage president Kevin Roberts. The tome — which earned a glowing foreword by Republican vice presidential nominee JD Vance — reserves especially sharp words for vaccines.

In one section of the book, Roberts imagines that the federal government would somehow use alleged new capabilities to “deplatform drivers” of cars for “failing to follow the latest vaccine mandate.”

“Yet another powerful tool of social control falls into place,” he wrote.

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Nearly 90% of babies who had to be hospitalized with covid-19 had mothers who didn’t get the vaccine while they were pregnant, according to new data released by the Centers for Disease Control and Prevention. The findings appear in the agency’s Morbidity and Mortality Weekly Report.

Babies too young to be vaccinated had the highest covid hospitalization rate of any age group except people over 75.

The study looked at infant medical data from October 2022 to April 2024 in 12 states and underscores the critical importance of vaccinating pregnant people. It also echoes what physicians have anecdotally reported for more than three years — that people are still skeptical of covid vaccines due to persistent misinformation.

Of the 1,470 infants sick enough to be hospitalized due to covid, severe outcomes occurred “frequently,” according to the report. Excluding newborns hospitalized at birth, about 1 in 5 infants hospitalized with covid required intensive care, and nearly 1 in 20 required a ventilator.

“These aren’t necessarily high-risk, ill newborns. These are just regular, full-term, healthy newborn kids who happen to get covid and wind up on a ventilator in the hospital,” said Neil Silverman, a professor of clinical obstetrics and gynecology and the director of the Infectious Diseases in Pregnancy Program at the David Geffen School of Medicine at UCLA.

Babies can’t get the covid vaccination until they are at least 6 months old. That leaves a “huge window” when infants are most vulnerable, Silverman said. Vaccinating pregnant women so they pass the antibodies on to their newborns is an effective way of protecting babies during that time. Vaccination during pregnancy also protects pregnant people from severe disease.

But persistent vaccine misinformation online has led to skepticism among Silverman’s pregnant patients.

“The most frustrating response that I get from folks is that they need to do more research before they think about getting the covid vaccine,” Silverman said. “We have dozens and dozens of studies showing the safety of the mRNA vaccine. I don’t know how much more research we can provide to skeptics.”

Among the 1,000-plus babies hospitalized with covid, the median age was just 2 months old, according to the report. Nine of the infants died.

South Carolina pediatrician Deborah Greenhouse said she plans to share the study with families she cares for. “There absolutely is a proportion of the population who will look at this and say, ‘Hey, wow, I should get that vaccine. It could protect my baby,’” she said.

Greenhouse believes the new data could solidify the risk of skipping the vaccine when she speaks to families.

“I think that it might help to convince some parents when you can actually show them hospitalization numbers and you can show them intensive care numbers and you can show them mechanical ventilation numbers,” Greenhouse said. “Those things are a big deal.”

Often, Greenhouse waits to be informed that a person is pregnant before bringing up the updated covid shot. Now she’s rethinking that strategy. “As pediatricians we do get moms in our office who are pregnant and we have an opportunity to intervene and to do some education and make them understand how important this is,” she said.

Physicians can encourage vaccination by making it as easy and simple as possible, Silverman said. He encouraged fellow doctors to offer the shots in their offices, rather than sending patients to pharmacies or other providers.

“We lose probably 30 to 40% of vaccination opportunities once someone has to leave the office to get a vaccine,” Silverman said.

But offering covid shots in their clinics leaves some doctors with a difficult calculation. They are struggling to predict how many patients will be interested in the vaccine and may not be able to return all their excess doses. Many providers can’t afford to lose money on doses that won’t be used, but they still need to order enough to vaccinate vulnerable patients who want the shot.

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Soon after the U.S. Supreme Court issued its Roe v. Wade abortion ruling in 1973, Laura Esserman used her high school graduation speech to urge her classmates to vote for the Equal Rights Amendment to expand women’s access to property, divorce, and abortion.

Five decades later, with 14 states banning abortion in almost all circumstances, the University of California-San Francisco breast cancer surgeon has once again taken up the fight for women’s reproductive rights. Since 2021, when Texas prohibited most abortions, she has boycotted the San Antonio Breast Cancer Symposium — a conference she had regularly attended, and frequently headlined, for 34 years.

“People are passing laws that are legislating what should be a medical decision,” she said. “And I am objecting in whatever way I can.”

Esserman and other physicians have urged their colleagues and medical societies to move all professional meetings out of states that criminalize abortion. Short of a move, they have called for boycotts of the events.

In November, Esserman expects 300 health providers and researchers to meet in San Francisco for an alternative breast cancer conference.

The effort to move annual conferences — which pump substantial revenue into local communities and attract many of the nation’s 1.1 million physicians and other medical professionals looking to network, satisfy continuing education requirements, and learn about the latest developments in their fields — has led to some notable relocations.

The American College of Obstetricians and Gynecologists moved its 2023 annual meeting and an estimated 4,000 participants from New Orleans to Maryland in response to Louisiana’s abortion ban. An estimated 3,600 health care professionals attended the American Association of Immunologists’ conference in Chicago this year, after the group moved the meeting from its planned Phoenix location in response to Arizona’s restrictive abortion law.

“In addition to causing great physical and psychological harm to patients,” the association said in a statement, abortion bans “threaten irreparable damage to the private and trusted relationship between medical professionals and their patients.”

Yet even doctors who agree about reproductive rights disagree about how to express dissent. Some argue it’s more important than ever to visit states where abortion has been outlawed, to learn about the issues surfacing because of the laws, and to help people organize against them.

“We cannot support penalizing communities that are already harmed by this legislation,” said obstetrician and gynecologist Jamila Perritt, president and CEO of Physicians for Reproductive Health. “As opposed to withdrawing support, what we’re calling for is actually flooding those folks with support.”

Physicians for Reproductive Health has been providing security for doctors targeted by anti-abortion activists, Perritt said, and training doctors to teach abortion care in abortion-restricting states and to testify to state legislatures about the need for abortion access.

“There is a lot to be gained by coming to these states, supporting us, seeing the reality, and bringing these conversations into your conference space so that you can better understand our reality, rather than just boycotting that state completely, which is not helpful,” said Bhavik Kumar, chief medical officer for Planned Parenthood of Greater Ohio and a medical director for Planned Parenthood Gulf Coast in Texas and Louisiana.

Since the Supreme Court’s 2022 decision to overturn Roe and eliminate a federal constitutional right to abortion, all but nine states and Washington, D.C., have imposed abortion restrictions, according to the Guttmacher Institute.

The San Antonio Breast Cancer Symposium continues to be held in Texas, where abortion is banned in almost all instances, and boycott calls do not appear to have slowed turnout. In fact, the number of in-person attendees increased from just under 8,000 in 2019 to 8,220 last year, organizers said.

Breast oncologist Virginia Kaklamani, a University of Texas Health Science Center-San Antonio professor of medicine who co-directs the San Antonio symposium, plans to stay in Texas. She doesn’t believe in boycotts, though she does share boycott proponents’ concerns. Despite exceptions, such as the American Association of Pro-Life Obstetricians and Gynecologists, doctors have by and large spoken against abortion restrictions.

“I think the way to handle it is to talk to our elected officials, to go out and vote. Moving meetings from one place to another is not going to help,” Kaklamani said. “You stay and you fight for your patients.”

Esserman recognizes that boycott calls have not had significant impact, but she feels compelled to keep applying pressure anyway.

She can’t help but think about a patient who recently came to her San Francisco practice nine weeks pregnant and with an aggressive breast cancer. If she were to continue the pregnancy, she would be ineligible for the most effective treatment. “Where I live, she has a choice,” Esserman said. In some states, she would have no choice but to carry the pregnancy to term.

Cary Gross, a Yale School of Medicine professor who co-authored a JAMA Internal Medicine opinion piece last year advocating boycotts, cited three arguments: expressing the profession’s values, acting as an ethical consumer, and protecting the health of attendees. Women physicians of childbearing age have voiced fears about traveling to anti-abortion states, especially while pregnant.

“The legislators passing these laws are probably not going to change their stance,” Gross said. “But for the general population, the more you can do to alert people, to remind people there’s another way, you have to make your voice heard.”

Still, Gross, Esserman, and others pushing for boycotts can point to no evidence that their efforts have changed hearts and minds, let alone laws.

Instead of moving the American Society of Hematology’s 2022 meeting out of New Orleans after Louisiana imposed a trigger law to ban abortion, Jane Winter, the society’s president at the time, met with Louisiana’s then-governor, John Bel Edwards, and told him about women whose survival might depend on getting an abortion. They talked about her 22-year-old patient who had Hodgkin lymphoma and learned she was pregnant just before a planned stem cell transplant.

“Gov. Edwards was visibly moved by our clinical cases and shared that lawmakers had not considered the impact of abortion restrictions on the care of our patients,” Winters wrote in a column for The Hematologist.

Last year, the hematologists held their meeting in San Diego, and they will meet again in California, which has no post-Roe abortion restrictions, in December.

In an email, Winter said her conversation with Edwards changed nothing concrete, as far as she knows. But she added, “I do believe that telling the stories of specific individuals – in my case, those of my patients – is one way to begin to change minds.”

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

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

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“Donald Trump said he was going to allow Medicare to negotiate drug prices. He never did. We did.”

Vice President Kamala Harris at the ABC News presidential debate, Sept. 10

Since Vice President Kamala Harris entered the presidential race, she and former President Donald Trump have sparred over their approaches to lowering prescription drug costs. Harris has described this as an important campaign promise that Trump made but didn’t deliver on.

“Donald Trump said he was going to allow Medicare to negotiate drug prices,” Harris said during the ABC News debate on Sept. 10 in Philadelphia. “He never did. We did.”

She previously told CNN that Trump’s promise to pursue such negotiations “never happened” during his administration.

During the 2016 presidential campaign, Trump repeatedly promised, if elected, to take steps to allow the government to negotiate drug prices. He never enacted such a policy in office. The Trump administration pursued smaller, temporary programs aimed at lowering drug costs.

However, experts say the effect of Trump’s moves fell far short of the expected effect of the Medicare drug price negotiation program included in President Joe Biden’s Inflation Reduction Act and of what Trump promised.

Medicare Drug Price Negotiation Policy, Explained

The Inflation Reduction Act — a sweeping climate and health care law Biden signed in August 2022 — included a measure authorizing the Centers for Medicare & Medicaid Services to negotiate Medicare prescription drug prices directly with pharmaceutical companies.

“The idea behind drug price negotiation is that Medicare can use its buying power to get a better price than what is currently being negotiated for these drugs,” according to Juliette Cubanski, deputy director of the Program on Medicare Policy at KFF, a health information nonprofit that includes KFF Health News.

Medicare covers more than 67 million Americans, giving it enormous potential influence over prices for U.S. drugs and medical services.

In August, CMS announced it had secured significant discounts on the list prices of 10 drugs because of its negotiations. Those discounts ranged from a 38% reduction for blood cancer medication Imbruvica on the low end to a 79% cut for diabetes drug Januvia on the high side. (List prices and the prices Medicare drug plans pay can differ.)

The new prices are expected to save Medicare $6 billion in the first year, with Medicare beneficiaries set to save an additional $1.5 billion in out-of-pocket costs, according to the White House.

Those new prices aren’t set to take effect until 2026 — though Biden and Harris have highlighted other aspects of the law that are bringing down drug costs sooner, such as a $35-a-month out-of-pocket price cap on insulin for Medicare enrollees and a $2,000 yearly out-of-pocket spending cap for Part D drugs effective in January. The Part D program covers most generic and brand-name outpatient prescription drugs.

CMS will start negotiating prices for the next group of drugs — 15 a year for the next two years — in early 2025, and those talks will continue annually at least through the end of the decade.

Trump’s Promises Versus His Actions

As a presidential candidate in 2016, Donald Trump pledged to pursue prescription drug price negotiation programs — and sometimes overstated such a policy’s power to cut prices.

During multiple campaign rallies and media interviews that year, Trump suggested allowing the government to negotiate drug prices directly with manufacturers would save $300 billion a year, a claim a fact-checker said was “absurd” then.

“The problem is, we don’t negotiate,” Trump said during an MSNBC town hall in Charleston, South Carolina, on Feb. 17, 2016. “We’re the largest drug buyer in the world. We don’t negotiate.” He went on to say: “If we negotiated the price of drugs, Joe, we’d save $300 billion a year.”

Similarly, at a Feb. 24, 2016, rally in Virginia Beach, Virginia, Trump reiterated his interest in making this change. “If you bid them out we’ll save $300 billion … and we don’t even do it. We’re going to do it.” The pharmaceutical industry would push back, he said, but he added: “Trust me I can do it.”

In office, however, Trump backed away from those promises, rejecting a bill spearheaded by then-House Speaker Nancy Pelosi (D-Calif.) to authorize such negotiations. The Democratic-led House ultimately passed that legislation, though the Republican-led Senate didn’t consider it.

“Pelosi and her Do Nothing Democrats drug pricing bill doesn’t do the trick,” Trump wrote on X, the social platform then known as Twitter.

Trump pursued smaller initiatives that sought to lower drug costs. One such program, the “most favored nation” model, tried to cap the cost of some Part B medications — those administered in a doctor’s office or hospital outpatient setting — at the lowest price paid in certain peer nations with a per capita GDP of at least 60% that of the United States.

“Medicare is the largest purchaser of drugs anywhere in the world by far,” Trump said in announcing the program. “We’re finally going to use that incredible power to achieve a fairer and lower price for everyone.”

The Trump campaign didn’t respond to an inquiry about prescription drug price negotiations or the most favored nation model.

The program would have started in January 2021 and lasted seven years. CMS officials estimated the government would save more than $85 billion on Part B spending. But some of those savings came from assumptions that Medicare beneficiaries would lose access to some Part B medications under the model, with some manufacturers unlikely to sell products at the lower, foreign prices.

Trump’s program never took effect. Amid lawsuits from several drug companies and industry groups, a federal judge stayed the plan in December 2020. The Biden administration scrapped it in 2022.

Even if the most favored nation model had been enacted, experts say it wouldn’t have come close to saving Americans or the government as much money as the IRA’s drug price negotiation provisions. A contemporaneous analysis of Trump’s proposal estimated that 7% of the 60 million Medicare beneficiaries in 2018 would have benefited.

More importantly, the most favored nation model did not authorize the government to negotiate prescription drug prices with manufacturers — the policy Trump promised to implement.

What Comes Next?

A recent KFF poll shows 85% of Americans, including more than three-quarters of Republicans, favor allowing Medicare to negotiate prices with drug companies.

And lowering drug costs continues to be a key issue for both campaigns, with Trump and Harris sparring over everything from the price of insulin to the impact of the Inflation Reduction Act on Medicare spending.

“I’ll lower the cost of insulin and prescription drugs for everyone with your support, not only our seniors,” Harris told supporters at an Aug. 16 campaign event in Raleigh, North Carolina, promising to extend the IRA’s price caps.

A Trump campaign spokesperson, meanwhile, previously told KFF Health News that the former president “will do everything possible to lower drug costs for Americans when he’s back in the White House, just like he accomplished in his first term.” She provided no specifics.

Trump, however, has also repeatedly promised to repeal parts of the Inflation Reduction Act — though he has never specifically mentioned the drug price negotiation provision — and to rescind unspent money. Congressional Republicans have spoken publicly about their intentions to roll back the drug price negotiation provision.

Even without legislative changes, the next president will have the opportunity to steer Medicare’s prescription drug price negotiation process.

“An administration that wants to be more lenient on drug companies might be more lax in the negotiations process,” said Tricia Neuman, a senior vice president at KFF and the executive director of its Program on Medicare Policy. “Or the administration could perhaps be tougher than the Biden administration.”

Our Ruling

As a presidential candidate in 2016, Donald Trump promised to let the government negotiate prescription drug prices directly with pharmaceutical companies. As president, however, he instead tried to tie some U.S. drug prices to their costs in other countries. Drugmakers and industry groups sued, challenging the move, and courts blocked it.

Harris, therefore, is correct that Trump never was able to open Medicare up to drug negotiations despite his sweeping campaign promises.

We rate Harris’ claim True.

Our Sources:ABC News, “READ: Harris-Trump Presidential Debate Transcript,” Sept. 10, 2024

Axios, “Hill GOP Sets Sights on Scrapping Drug Price Talks,” Sept. 17, 2024

Centers for Medicare & Medicaid Services, “Trump Administration Announces Prescription Drug Payment Model To Put American Patients First,” Nov. 18, 2020

CNN, “READ: Harris and Walz’s Exclusive Joint Interview With CNN,” Aug. 30, 2024

Congress.gov, “H.R.3 – Elijah E. Cummings Lower Drug Costs Now Act,” accessed Sept. 17, 2024

Factbase, “Donald Trump Attends an MSNBC Town Hall in Charleston, South Carolina,” Feb. 17, 2016

Factbase, “Donald Trump in Pawleys Island, SC,” Feb. 19, 2016

Federal Register, “42 CFR Part 513,” Nov. 27, 2020

KFF, “A Status Report on Prescription Drug Policies and Proposals at the Start of the Biden Administration,” Feb. 11, 2021

KFF, “KFF Health Tracking Poll September 2024: Support for Reducing Prescription Drug Prices Remains High, Even As Awareness of IRA Provisions Lags,” Sept. 13, 2024

KFF, “Most People Are Unlikely To See Drug Cost Savings From President Trump’s ‘Most Favored Nation’ Proposal,” Aug. 27, 2020

KFF Health News, “5 Things To Know About the New Drug Pricing Negotiations,” Aug. 30, 2023

KFF Health News, “Harris Did Not Vote To ‘Cut Medicare,’ Despite Trump’s Claim,” Aug. 20, 2024

KFF Health News, “Trump Is Wrong in Claiming Full Credit for Lowering Insulin Prices,” July 18, 2024

Phone interview with Tricia Neuman, a senior vice president at KFF and the executive director of its Program on Medicare Policy, Sept. 13, 2024

Reuters, “Federal Judge Blocks Trump Administration Drug Pricing Rule,” Dec. 23, 2020

The Washington Post, “Trump’s Truly Absurd Claim He Would Save $300 Billion a Year on Prescription Drugs,” Feb. 18, 2016

The White House, “Remarks by President Trump at Signing of Executive Orders on Lowering Drug Prices” July 24, 2020

The White House, “Remarks by Vice President Harris at a Campaign Event in Raleigh, NC,” Aug. 16, 2024

X, then known as Twitter, “@RealDonaldTrump,” Nov. 22, 2019

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ADAIR, Iowa — The blue-and-white highway sign for the eastbound rest stop near here displays more than the standard icon of a person in a wheelchair, indicating facilities are accessible to people who can’t walk. The sign also shows a person standing behind a horizontal rectangle, preparing to perform a task.

The second icon signals that this rest area along Interstate 80 in western Iowa has a bathroom equipped with a full-size changing table, making it an oasis for adults and older children who use diapers because of disabilities.

“It’s a beacon of hope,” said Nancy Baker Curtis, whose 9-year-old son, Charlie, has a disability that can leave him incontinent. “I’m like, ‘Oh my gosh, we’re finally there.’”

The white changing table is 6 feet long and can be lowered and raised with a handheld controller wired to an electric motor. When not in use, the table folds up against the wall.

The table was recently installed as part of a national effort to make public bathrooms more accessible in places like airports, parks, arenas, and gas stations. Without such options, people with disabilities often wind up being changed on bathroom floors, in cars, or even on the ground outside.

Many families hesitate to go out because of the lack of accessible restrooms. “We all know somebody who’s tethered to their home by bathroom needs,” Baker Curtis said. She doesn’t want her son’s life to be limited that way. “Charlie deserves to be out in the community.”

She said the need can be particularly acute when people are traveling in rural areas, where bathroom options are sparse.

Baker Curtis, who lives near Des Moines, leads the Iowa chapter of a national group called “Changing Spaces,” which advocates for adult-size changing tables. The group offers an online map showing scores of locations where they’ve been installed.

Advocates say such tables are not explicitly required by the federal Americans with Disabilities Act. But a new federal law will mandate them in many airports in coming years, and states can adopt building codes that call for them. California, for example, requires them in new or renovated auditoriums, arenas, amusement parks, and similar facilities with capacities of at least 2,500 people. Ohio requires them in some settings, including large public facilities and highway rest stops. Arizona, Illinois, Maryland, Minnesota, and New Hampshire also have taken steps to require them in some public buildings.

Justin Boatner of Arlington, Virginia, advocates for more full-size changing tables in the Washington, D.C., area. Boatner, 26, uses a wheelchair because of a disability similar to muscular dystrophy. He uses diapers, which he often changes himself.

He can lower an adjustable changing table to the height of his wheelchair, then pull himself onto it. Doing that is much easier and more hygienic than getting down on the floor, changing himself, and then crawling back into the wheelchair, he said.

Boatner said it’s important to talk about incontinence, even though it can be embarrassing. “There’s so much stigma around it,” he said.

He said adult changing tables are still scarce, including in health care facilities, but he’s optimistic that more will be installed. Without them, he sometimes delays changing his diaper for hours until he can get home. That has led to serious rashes, he said. “It’s extremely uncomfortable.”

Iowa legislators in recent years have considered requiring adult changing tables in some public restrooms. They declined to pass such a bill, but the discussion made Iowa Department of Transportation leaders aware of the problem. “I’m sorry to say, it was one of those things we’d just never thought of,” said Michael Kennerly, director of the department’s design bureau.

Kennerly oversees planning for rest stops. He recalls an Iowan telling him about changing a family member outside in the rain, with only an umbrella for shelter. Others told him how they changed their loved ones on bathroom floors. “It was just appalling,” he said.

Iowa began installing adult changing tables in rest stops in 2022, and it has committed to including them in new or remodeled facilities. So far, nine have been installed or are in the process of being added. Nine others are planned, with more to come, Kennerly said. Iowa has 38 rest areas equipped with bathrooms.

Kennerly estimated it costs up to $14,000 to remodel an existing rest-stop bathroom to include a height-adjustable adult changing table. Incorporating adult changing tables into a new rest stop building should cost less than that, he said.

Several organizations offer portable changing tables, which can be set up at public events. Some are included in mobile, accessible bathrooms carried on trailers or trucks. Most permanent adult changing tables are set up in “family restrooms,” which have one toilet and are open to people of any gender. That’s good, because the act of changing an adult is “very intimate and private,” Baker Curtis said. It’s also important for the tables to be height-adjustable because it’s difficult to lift an adult onto a fixed-height table, she said.

Advocates hope adult changing tables will become nearly as common as infant changing tables, which once were rare in public bathrooms.

Jennifer Corcoran, who lives near Dayton, Ohio, has been advocating for adult changing tables for a decade and has seen interest rise in recent years.

Corcoran’s 24-year-old son, Matthew, was born with brain development issues. He uses a wheelchair and is unable to speak, but he accompanies her when she lobbies for improved services.

Corcoran said Ohio leaders this year designated $4.4 million in federal pandemic relief money to be distributed as grants for changing-table projects. The program has led to installations at Dayton’s airport and art museum, plus libraries and entertainment venues, she said.

Ohio also is adding adult changing tables to rest stops. Corcoran said those tables are priceless because they make it easier for people with disabilities to travel. “Matthew hasn’t been on a vacation outside of Ohio for more than five years,” she said.

Kaylan Dunlap serves on a committee that has worked to add changing-table requirements to the International Building Code, which state and local officials often use as a model for their rules.

Dunlap, who lives in Alabama, works for an architecture firm and reviews building projects to ensure they comply with access standards. She expects more public agencies and companies will voluntarily install changing tables. Maybe someday they will be a routine part of public bathrooms, she said. “But I think that’s a long way out in the future, unfortunately.”

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Ohio Republican Sen. JD Vance and Minnesota Democratic Gov. Tim Walz met in an Oct. 1 vice presidential debate hosted by CBS News that was cordial and heavy on policy discussion — a striking change from the Sept. 10 debate between Vice President Kamala Harris and former President Donald Trump.

Vance and Walz acknowledged occasional agreement on policy points and respectfully addressed each other throughout the debate. But they were more pointed in their attacks on their rival’s running mates for challenges facing the country, including immigration and inflation.

The moderators, “CBS Evening News” anchor Norah O’Donnell and “Face the Nation” host Margaret Brennan, had said they planned to encourage candidates to fact-check each other, but sometimes clarified statements from the candidates.

After Vance made assertions about Springfield, Ohio, being overrun by “illegal immigrants,” Brennen pointed out that a large number of Haitian immigrants in Springfield, Ohio, are in the country legally. Vance objected and, eventually, CBS exercised the debate ground rule that allows the network to cut off the candidates’ microphones.

Most points were not fact checked in real time by the moderators. Vance resurfaced a recent health care theme – that as president, Donald Trump sought to save the Affordable Care Act – and acknowledged that he would support a national abortion ban.

Walz described how health care looked before the ACA compared to today. Vance offered details about Trump’s health care “concepts of a plan” – a reference to comments Trump made during the presidential debate that drew jeers and criticism for the former president, who for years said he had a plan to replace the ACA that never surfaced. Vance pointed to regulatory changes advanced during the Trump administration, used weedy phrases like “reinsurance regulations” and floated the idea of allowing states “to experiment a little bit on how to cover both the chronically ill but the non-chronically ill.”

Walz responded with a quick quip: “Here’s where being an old guy gives you some history. I was there at the creation of the ACA.” He said that before then insurers had more power to kick people off their plans. Then he detailed Trump’s efforts to undo the ACA as well as why the law’s preexisting condition protections were important.

“What Senator Vance just explained might be worse than a concept, because what he explained is pre Obamacare,” Walz said.

The candidates sparred on numerous topics. Our PolitiFact partners fact-checked the debate here and on their live blog.

The health-related excerpts follow.

The Affordable Care Act:

Vance: “Donald Trump could have destroyed the (Affordable Care Act). Instead, he worked in a bipartisan way to ensure that Americans had access to affordable care.”

False.

As president, Trump worked to undermine and repeal the Affordable Care Act. He cut millions of dollars in federal funding for ACA outreach and navigators who help people sign up for health coverage. He enabled the sale of short-term health plans that don’t comply with the ACA consumer protections and allowed them to be sold for longer durations, which siphoned people away from the health law’s marketplaces.

Trump’s administration also backed state Medicaid waivers that imposed first-ever work requirements, reducing enrollment. He also ended insurance company subsidies that helped offset costs for low-income enrollees. He backed an unsuccessful repeal of the landmark 2010 health law and he backed the demise of a penalty imposed for failing to purchase health insurance.

Affordable Care Act enrollment declined by more than 2 million people during Trump’s presidency, and the number of uninsured Americans rose by 2.3 million, including 726,000 children, from 2016 to 2019, the U.S. Census Bureau reported; that includes three years of Trump’s presidency. The number of insured Americans rose again during the Biden administration.

Abortion and Reproductive Health:

Vance: “As I read the Minnesota law that (Walz) signed into law … it says that a doctor who presides over an abortion where the baby survives, the doctor is under no obligation to provide lifesaving care to a baby who survives a botched late-term abortion.”

False.

Experts said cases in which a baby is born following an attempted abortion are rare. Less than 1% of abortions nationwide occur in the third trimester. And infanticide, the crime of killing a child within a year of its birth, is illegal in every state.

In May 2023, Walz, as Minnesota governor, signed legislation updating a state law for “infants who are born alive.” It said babies are “fully recognized” as human people and therefore, protected under state law. The change did not alter regulations that already require doctors to provide patients with appropriate care.

Previously, state law said, “All reasonable measures consistent with good medical practice, including the compilation of appropriate medical records, shall be taken by the responsible medical personnel to preserve the life and health of the born alive infant.” The law was updated to instead say medical personnel must “care for the infant who is born alive.”

When there are fetal anomalies that make it likely the fetus will die before or soon after birth, some parents decide to terminate the pregnancy by inducing childbirth so that they can hold their dying baby, Democratic Minnesota state Sen. Erin Maye Quade told PolitiFact in September.

This update to the law means infants who are “born alive” receive appropriate medical care dependent on the pregnancy’s circumstances, Maye Quade said.

Vance supported a national abortion ban before becoming Trump’s running mate.

CBS News moderator Margaret Brennan told Vance, “You have supported a federal ban on abortion after 15 weeks. In fact, you said, if someone can’t support legislation like that, quote, ‘you are making the United States the most barbaric pro-abortion regime anywhere in the entire world.’ My question is, why have you changed your position?”

Vance said that he “never supported a national ban” and, instead, previously supported setting “some minimum national standard.”

But in a January 2022 podcast interview, Vance said, “I certainly would like abortion to be illegal nationally.”In November, he told reporters that “we can’t give in to the idea that the federal Congress has no role in this matter.”

Since joining the Trump ticket, Vance has aligned his abortion rhetoric to match Trump’s and has said that abortion legislation should be left up to the states.

-Samantha Putterman of PolitiFact, on the live blog

A woman’s 2022 death in Georgia following the state passing its six-week abortion ban was deemed “preventable.”

Walz talked about the death of 28-year-old Amber Thurman, a Georgia woman who died after her care was delayed because of the state’s six-week abortion law. A judge called the law unconstitutional this week.

A Sept. 16 ProPublica report  found that Thurman had taken abortion pills and encountered a rare complication. She sought care at Piedmont Henry Hospital in Atlanta to clear excess fetal tissue from her uterus, called a dilation and curettage, or D&C. The procedure is commonly used in abortions, and any doctor who violated Georgia’s law could be prosecuted and face up to a decade in prison.

Doctors waited 20 hours to finally operate, when Thurman’s organs were already failing, ProPublica reported. A panel of health experts tasked with examining pregnancy-related deaths to improve maternal health, deemed Thurman’s death “preventable,” according to the report, and said the hospital’s delay in performing the procedure had a “large” impact.

— Samantha Putterman of PolitiFact, on the live blog

What Project 2025 Says About Some Forms of Contraception, Fertility Treatments

Walz said that Project 2025 would “make it more difficult, if not impossible, to get contraception and limit access, if not eliminate access, to fertility treatments.”

Mostly False. The Project 2025 document doesn’t call for restricting standard contraceptive methods, such as birth control pills, but it defines emergency contraceptives as “abortifacients” and says they should be eliminated from the Affordable Care Act’s covered preventive services. Emergency contraception, such as Plan B and Ella, are not considered abortifacients, according to medical experts.

PolitiFact did not find any mention of in vitro fertilization throughout the document, or specific recommendations to curtail the practice in the U.S., but it contains language that supports legal rights for fetuses and embryos. Experts say this language can threaten family planning methods, including IVF and some forms of contraception.

— Samantha Putterman of PolitiFact, on the live blog

Walz: “Their Project 2025 is gonna have a registry of pregnancies.”

False.

Project 2025 recommends that states submit more detailed abortion reporting to the federal government. It calls for more information about how and when abortions took place, as well as other statistics for miscarriages and stillbirths.

The manual does not mention, nor call for, a new federal agency tasked with registering pregnant women.

Fentanyl and Opioids:

Vance: “Kamala Harris let in fentanyl into our communities at record levels.”

Mostly False.

Illicit fentanyl seizures have been rising for years and reached record highs under Biden’s administration. In fiscal year 2015, for example, U.S. Customs and Border Protection seized 70 pounds of fentanyl. As of August 2024, agents have seized more than 19,000 pounds of fentanyl in fiscal year 2024, which ended in September.

But these are fentanyl seizures — not the amount of the narcotic being “let” into the United States.  

Vance made this claim while criticizing Harris’ immigration policies. But fentanyl enters the U.S. through the southern border mainly at official ports of entry. It’s mostly smuggled in by U.S. citizens, according to the U.S. Sentencing Commission. Most illicit fentanyl in the U.S. comes from Mexico made with chemicals from Chinese labs.

Drug policy experts have said that the illicit fentanyl crisis began years before Biden’s administration and that Biden’s border policies are not to blame for overdose deaths. 

Experts have also said Congress plays a role in reducing illicit fentanyl. Congressional funding for more vehicle scanners would help law enforcement seize more of the fentanyl that comes into the U.S. Harris has called for increased enforcement against illicit fentanyl use.

Walz: “And the good news on this is, is the last 12 months saw the largest decrease in opioid deaths in our nation’s history.”

Mostly True.

Overdose deaths involving opioids decreased from an estimated 84,181 in 2022 to 81,083 in 2023, based on the most recent provisional data from the Centers for Disease Control and Prevention. This decrease, which took place in the second half of 2023, followed a 67% increase in opioid-related deaths between 2017 and 2023.

The U.S. had an estimated 107,543 drug overdose deaths in 2023 — a 3% decrease from the 111,029 deaths estimated in 2022. This is the first annual decrease in overall drug overdose deaths since 2018. Nevertheless, the opioid death toll remains much higher than just a few years ago, according to KFF.

More Health-Related Comments:

Vance Said ‘Hospitals Are Overwhelmed.’ Local Officials Disagree.

We asked health officials ahead of the debate what they thought about Vance’s claims about Springfield’s emergency rooms being overwhelmed.

“This claim is not accurate,” said Chris Cook, health commissioner for Springfield’s Clark County.

Comparison data from the Centers for Medicare and Medicaid Services tracks how many patients are “left without being seen” as part of its effort to characterize whether emergency departments are able to handle their patient loads. High percentages usually signal that the facility doesn’t have the staff or resources to provide timely and effective emergency room care.

Cook said that the full-service hospital, Mercy Health Springfield Regional Medical Center, reports its emergency department is at or better than industry standard when it comes to this metric.

In July 2024, 3% of Mercy Health’s patients were counted in the “left-without-being-seen” category — the same level as both the state and national average for high-volume hospitals. In July 2019, Mercy Health tallied 2% of patients who “left without being seen.” That year, the state and national averages were 1% and 2%, respectively.  Another Centers for Medicare and Medicaid Services 2024 datapoint shows Mercy Health patients spent less time in the emergency department per visit on average — 152 minutes — compared with state and national figures: 183 minutes and 211 minutes, respectively. Even so, Springfield Regional Medical Center’s Jennifer Robinson noted that Mercy Health has seen high utilization of women’s health, emergency, and primary care services. 

— Stephanie Armour, Holly Hacker, and Stephanie Stapleton of KFF Health News, on the live blog

Minnesota’s Paid Leave Takes Effect in 2026

Walz signed paid family leave into law in 2023 and it will take effect in 2026.

The law will provide employees up to 12 weeks of paid medical leave and up to 12 weeks of paid family leave, which includes bonding with a child, caring for a family member, supporting survivors of domestic violence and sexual assault, and supporting active-duty deployments. A maximum 20 weeks are available in a benefit year if someone takes both medical and family leave.

Minnesota used a projected budget surplus to jump-start the program; funding will then shift to a payroll tax split between employers and workers. 

— Amy Sherman of Politifact, on the live blog

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It was expected that the past year and a half would be a fraught time for Medicaid, the workhorse of the nation’s health system, which covers more people than any other government health insurance program.

In April 2023, states resumed screening people for Medicaid eligibility and terminating coverage for those they said no longer qualified or failed to renew, which had been prohibited under pandemic-era protections. Many health advocates feared the uninsured rate, which had just hit historic lows, would resurge.

But while more than 25 million Americans have lost Medicaid coverage during the Medicaid “unwinding,” many also gained coverage as more than a dozen states expanded health coverage for lower-income people, including children, pregnant women and incarcerated people. And early data shows the uninsured rate has risen only modestly.

The expansions will mitigate the effects of the unwinding, though it’s too early to know by how much.

“The pandemic was destructive and concerning and clearly demonstrated that Medicaid is so crucially important for our national safety net,” said Jennifer Babcock, senior vice president for Medicaid policy at the Association for Community Affiliated Plans, a trade group representing nonprofit health insurers that cover people on Medicaid. “These expansions are incredibly meaningful.”

The biggest expansion occurred in December, when North Carolina joined 39 other states and D.C. in widening Medicaid eligibility to include adults with incomes up to 138 percent of the federal poverty level, or $20,783 for an individual. More than 500,000 North Carolinians gained coverage.

Other expansions since spring 2023 include:

• South Dakota, like North Carolina, expanded Medicaid coverage under the Affordable Care Act last year. About 22,000 people enrolled in the first eight months.
• In July, Oregon launched a Medicaid-like coverage option for those who earn too much to qualify for Medicaid under federal limits. More than 50,000 people have enrolled so far, Oregon officials say.
• In January, a new federal law required states to allow children under the age of 19 to stay covered under Medicaid or the related Children’s Health Insurance Program for at least a year after signing up. Several are going beyond that: New Mexico and Washington, for example, allow children to stay covered up to age 6. California passed legislation to expand continuous eligibility for children up to age 4 but has not yet implemented the policy.
• Three states widened income eligibility for children to qualify for Medicaid: Arizona, Maine and North Dakota.
• This year, Utah began offering a Medicaid-like coverage option for children regardless of immigration status, though the program is capped at about 2,000 children.
• Several states expanded coverage for pregnant women, including Alabama and Maryland, which expanded eligibility to pregnant residents regardless of immigration status. And with changes in Maine, Oregon and Vermont, 46 states and D.C. now offer one year of postpartum coverage.
• In June, five states — Illinois, Kentucky, Oregon, Utah and Vermont — received approval from the Biden administration to extend Medicaid coverage to incarcerated people up to 90 days before their release. Those states will join several others in offering that coverage.

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Dave Lantz is no stranger to emergency department or doctor bills. With three kids in their teens and early 20s, “when someone gets sick or breaks an arm, all of a sudden you have thousand-dollar medical bills,” Lantz said.

The family’s health plan that he used to get as the assistant director of physical plant at Lycoming College, a small liberal arts school in central Pennsylvania, didn’t start to cover their costs until they had paid $5,600 in medical bills. The Lantzes were on the hook up to that annual threshold. The high-deductible plan wasn’t ideal for the family of five, but it was the only coverage option available to them.

Things are very different now. In mid-2022, the college ditched its group health plan and replaced it with a new type of plan — an individual coverage health reimbursement arrangement, or ICHRA.

Now Lantz gets a set amount from his employer every month that he puts toward a family plan on the individual insurance market. He opted for a zero-deductible plan with a richer level of coverage than the group plan. Though its $790 monthly premium is higher than the $411 he used to pay, he ends up saving money overall by not having to pay down that big deductible. Plus, he now has more control over his health spending.

“It’s nice to have the choice to balance the high deductible versus the higher premium,” Lantz said. Before, “it was tough to budget for that deductible.”

As health insurance costs continue to rise, employers are eyeing this type of health reimbursement arrangement to control their health care spending while still providing a benefit that workers value. Some consumer advocates are concerned the plans could result in skimpier, pricier coverage for certain consumers, especially sicker, older ones.

The plans allow employers to make tax-preferred contributions to employees to use to buy coverage on the individual market. Employers thus limit their financial exposure to rising health care costs. Everybody wins, say backers of the plans, which were established in 2019 as part of a group of proposals the Trump administration said would increase health insurance choice and competition.

“It’s a way to offer coverage to more diverse employee groups than ever before and set a budget that controls costs for the companies,” said Robin Paoli, executive director of the HRA Council, an advocacy group.

Some health insurance specialists say the plans aren’t necessarily a good option for consumers or the individual insurance market. Even though the rules prevent employers from offering this type of coverage to specific workers who may be sicker and more expensive to cover than others, employers with relatively unhealthy workforces may find the arrangements appealing. This, in turn, may drive up premiums in the individual market, according to an analysis by the University of Southern California-Brookings Schaeffer Initiative for Health Policy.

Plans sold on the individual market often have smaller provider networks and higher deductibles than employer-sponsored coverage. Premiums are often higher than for comparable group coverage. Workers, especially lower-wage ones, might be better off financially with premium tax credits and cost-sharing reductions to buy an Affordable Care Act marketplace plan, but using the work-based ICHRA benefit would disqualify them.

“From a worker perspective, the largest impact is that being offered affordable coverage by your employer makes you ineligible for marketplace subsidies,” said Matthew Fiedler, a senior fellow at the Brookings Institution who co-authored the analysis of the rule establishing the plans.

The plans are currently offered to only a tiny slice of workers: an estimated 500,000 of the roughly 165 million people with employer-sponsored coverage, according to the HRA Council. But interest is growing. The number of employers offering ICHRAs and an earlier type of plan, called qualified small-employer HRAs, increased 29% from 2023 to 2024, according to the council. And, although small employers have made up the bulk of adopters to date, larger employers with at least 50 workers are the fastest-growing cohort.

Individual market insurers like Oscar Health and Centene see opportunities to expand their footprint through the plans. Some venture capitalists are touting them as well.

“The [traditional group] health insurance cornerstone from 60 years ago has outlived its usefulness,” said Matt Miller, whose Headwater Ventures has invested in the ICHRA administrator Venteur. “The goal is to ensure people have coverage, detaching it from the employment construct and making it portable.”

Employers can offer this type of health reimbursement arrangement to some classes of employees and group plans to others based on characteristics such as geography, full-time vs. part-time status, or salaried vs. hourly pay.

Lycoming College wasn’t aiming to be on the cutting edge when it made this coverage switch. Faced with a 60% premium increase after some members had high claims, the school, which covers roughly 400 faculty and staff and their family members, needed to look at alternatives, said Kacy Hagan, its associate vice president for human resources and compliance.

In the end, they opted to offer ICHRA coverage to any employee who worked at least 30 hours a week.

In the first year of offering the new benefit, the college saved $1.4 million in health care costs over what they would have spent if they’d stayed with its group plan. Employees saved an average of $1,200 each in premiums.

“The finance folks really like it,” Hagan said. As for employees, “from a cost standpoint, people tend to be pretty happy with it, and people really like having a choice of plans,” she said. However, there have been issues with the plan’s administration. Some employees’ coverage was dropped and had to be reinstated, she said. Those problems have been largely resolved since they switched plan administrators this year.

This coverage arrangement can be complicated to manage. Instead of a company paying one group health plan premium, dozens of individual health insurers may need to be paid. And employees who’ve never shopped for a plan before need help figuring out what coverage works for them and signing up.

The complexity can be off-putting. This year, a number of companies that have tried this type of health reimbursement arrangement decided they’d rather go back to a group plan, said Tim Hebert, managing partner of Sage Benefit Advisors, based in Fort Collins, Colorado.

“They say, ‘Employees are all over the place in different plans, and they don’t feel like they’re being taken care of,’” Hebert said.

Vendors continue to crop up to help employers like Lycoming College and their workers manage their plans.

“If you just say, ‘Here’s $1,000,’ it’s extremely discombobulating and confusing,” said Jack Hooper, CEO of Take Command Health, which now administers the Lycoming ICHRA.

It’s unclear whether the plans will take off or remain a niche product.

“It’s a big disrupter, like 401(k)s,” said Mark Mixer, board chair of the HRA Council and CEO of HealthOne Alliance in Dalton, Georgia. Still, it’s not for everyone. “It’s simply another tool that employers should consider. When it fits, do it.”

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

Clarifying the FDA’s Role and Authority Over Direct-to-Consumer Drug Ads

While several inaccuracies in the recent opinion piece about direct-to-consumer prescription drug advertisements by KFF Health News’ Elisabeth Rosenthal have been corrected in response to FDA’s direct requests, in this letter the FDA seeks to provide additional information about the agency’s oversight to readers and correct any misimpressions that may remain (“Perspective: With TV Drug Ads, What You See Is Not Necessarily What You Get,” Sept. 9). The FDA is strongly committed to protecting public health by ensuring prescription drug promotion by or on behalf of a drug manufacturer, distributor, or packer is truthful, balanced, and accurately communicated.

Federal law has long required prescription drug advertisements to present a true statement regarding the side effects, contraindications, and effectiveness associated with the advertised prescription drug (with information relating to major side effects and contraindications referred to as the “major statement” in TV or radio ads). This requirement has been in place for many decades and helps to ensure a truthful and non-misleading presentation of information about the prescription drug, as well as a balanced presentation of safety and efficacy information.

In 2023, the FDA issued a final rule establishing five standards to help ensure that the major statement in ads for human prescription drugs in TV/radio format is presented to consumers in a clear, conspicuous, and neutral manner. The aforementioned article suggests it is unclear how to determine whether an advertisement complies with this rule. However, the rule and the FDA’s plain language guidance pointedly outline specific criteria for each standard in order for the ad to be considered compliant. The FDA believes these standards will help consumers better understand the advertised drug’s side effects, so they are better informed when they participate in health care decision-making. Companies have until Nov. 20, 2024, to bring ads into compliance.

Additionally, the article does not discuss one of the agency’s crucial post-marketing surveillance tools for prescription drug ads. Federal law generally does not require companies to submit promotional communications prior to use, but companies are required to submit ads at the time of initial dissemination. These submissions, in addition to other tools like the Bad Ad program, greatly aid the FDA’s surveillance of promotional activities.

The FDA takes seriously its responsibility to monitor prescription drug ads and to ensure they are compliant with FDA’s applicable laws and regulations. We will continue to monitor and take appropriate action if prescription drug advertisements are found to contain false or misleading information.

— Catherine Gray, director of the FDA’s Office of Prescription Drug Promotion, Washington, D.C.

Jerry Berger, formerly the director of media relations at a Harvard Medical School teaching hospital, shared the article on the social platform X:

And then there's the matter of how much all that's spent on these ads affect the pricingWith TV Drug Ads, What You See Is Not Necessarily What You Get https://t.co/HGxkg949UA via @kffhealthnews

— jerrymberger (@jerrymberger) September 9, 2024

— Jerry Berger, Boston

How to Raise the Cybersecurity Bar

I just finished reading the article “Cyberattacks Plague the Health Industry. Critics Call Feds’ Response Feeble and Fractured” (Sept. 19), and while it is on point in terms of the inadequacy of the federal cybersecurity management, I think it should have gone deeper into outlining other creative options to raise the cybersecurity bar among all health care providers. Similar to the adoption of electronic health records, provider cyber-preparedness needs an economic infusion of technology and resources; a “Meaningful Use”-like program if you will (but, hopefully, better defined and implemented!). The federal government also needs to take a more active role in applying “offensive resources” to neutralize threats when they arise and before they expand across the health care ecosystem.

— Robert Swaskoski, vice president of enterprise risk management for Heritage Valley Health System, Sewickley, Pennsylvania

An employee benefits specialist outside Atlanta chimed in on social media:

"Responsibility for the nation’s #healthcare #cybersecurity is shared by three offices within two different agencies." Maybe that's part of the problem? Ya think? https://t.co/PF8Sa2F5Ou

— Catherine Collingwood Estes 🕊️🧡🇺🇸 (@collingwest) September 19, 2024

— Catherine Collingwood Estes, Duluth, Georgia**

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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Vice President Kamala Harris is seeing a surge of support from Black women voters, galvanized in part by her work on health care issues such as maternal mortality, reproductive rights, and gun control.

The enthusiasm may be key for Democratic turnout at the polls in critical battleground states.

Black women have always been among the most reliable voters in the Democratic base and were central to former President Barack Obama’s victories in 2008 and 2012. Enthusiasm was also robust for President Joe Biden in 2020. But this year, before he bowed out of the race and Harris became the Democratic nominee, his support among this critical demographic had been fading, which could have dampened turnout in swing states.

Black voters’ support for the top of the Democratic ticket has since increased. In July, before he left the race, 64% of Black voters supported Biden, according to the Pew Research Center. Seventy-seven percent of Black voters supported Harris in August.

Black voter turnout, especially in rural areas of Georgia, North Carolina, and Pennsylvania, could help propel Harris to victory. That support — especially among Black women — has swelled since Biden’s departure, polling shows.

“This is a renaissance,” said Holli Holliday, a lawyer in the Washington, D.C., area who is president of Sisters Lead Sisters Vote, a group that works to advance Black women’s political leadership. “We’re partnering with a collective of Black women organizations to collaborate and collectively move like we never have before.”

Gun safety issues could especially resonate in Georgia, where both Harris and the Republican nominee, former President Donald Trump, are vying for the support of Black voters. A Sept. 4 shooting at Apalachee High School near Winder, Georgia, killed four people and left nine hospitalized with injuries, with scores more facing mental and emotional scars.

Eighty-two percent of Black women had a favorable view of Harris in August, according to the Pew Research Center, up from 67% in May.

And more Black women than before say they will go to the polls. Almost 70% of Black women said in August they were extremely or very motivated to vote, according to Pew, up from 51% in July. Sixteen million Black women in the U.S. are eligible to vote and 67% of them are registered, according to Higher Heights, a political action committee focused on mobilizing and electing Black women.

Trump has also sought support from Black women voters. His campaign released a video in August showcasing Black women pledging to support him over Harris, pointing to his economic policies as a key reason.

Still, only 8% of Black women voters say the Republican Party does a better job of looking out for their interests, according to a poll done in May and June by KFF, a health information nonprofit that includes KFF Health News.

Harris’ attention to health issues particularly important to Black women is helping to draw their support, said Kimberly Peeler-Allen, a co-founder of Higher Heights. In 2021, the vice president called for a more robust government response to the nation’s high maternal mortality rates.

The Centers for Disease Control and Prevention say Black women are three times as likely to die from pregnancy-related complications as white women. The disparity is driven in part by differing access to quality health care, underlying health conditions, bias, and racism.

“The vice president’s focus on Black maternal morbidity has gotten a lot of attention and gratitude,” Peeler-Allen said. “High-quality and affordable care, as well as the economy, are one of the top issues that drive Black women voters to get to the polls.”

As a senator, Harris co-sponsored a package of legislation aimed at improving maternal health, with a focus on Black women. The Biden administration pushed to expand maternal health initiatives in rural communities and improve bias training for health care providers, including by awarding more than $103 million in grants in 2023 to support and expand access to maternal health care.

Trump in 2018 signed legislation intended to reduce the maternal mortality rate that provided $58 million a year for five years to help states investigate and prevent pregnancy-related deaths.

As vice president, Harris also pushed states to extend postpartum care in Medicaid, the state-federal health program for low-income and disabled people. Biden signed legislation that temporarily gave states the option to expand the coverage to a full year from the required 60 days, with federal matching funds, and later signed a law allowing states to make the extended benefits permanent.

Illinois, New Jersey, and Virginia were the only states providing 12 months of postpartum Medicaid coverage when Harris became vice president. Today, the yearlong benefit has been adopted by at least 46 states and Washington, D.C., according to KFF.

“I am so thrilled out of my mind. I didn’t think we’d get there that quick,” said Rep. Robin Kelly (D-Ill.), who has helped lead congressional efforts to reduce mortality and morbidity among mothers and pregnant women, especially Black women. “It helps having everybody at the Senate, House, and White House working together. I am optimistic we are going to have someone at the top who gets it. We still have a ways to go.”

Harris’ support for measures to stem gun violence also helps her appeal to Black women. Harris said during her debate with Trump last month that she’s a gun owner. But she has pressed for banning what are often known as assault weapons and to implement universal background checks ahead of gun purchases — issues that may resonate in Georgia, especially, after the Apalachee shooting.

Eighty-four percent of Black women favor Harris on gun reform over Trump, according to a 2024 poll conducted for The Highland Project, a women-led coalition focused on creating multigenerational wealth in Black communities.

Trump’s campaign advisers have said he would protect access to guns by appointing federal judges who oppose restrictions. He has supported gun rights despite two apparent assassination attempts during the campaign, and as president in 2017 he reversed a controversial Obama administration regulation making it harder for people with mental health issues to purchase guns.

Win With Black Women, a network of Black women leaders, hosted a planning call with Black women the day Biden withdrew from the race. About 44,000 participants joined the meeting.

Waning enthusiasm for the Democratic ticket among Black women before Harris entered the race could have undermined turnout. And turnout matters: In the 2020 presidential race, seven states were won by less than three percentage points each.

“To have 44,000 black women on a phone call that Sunday night? That enthusiasm, that’s good for Democrats,” said Kelly Dittmar, research director at Rutgers’ Center for American Women and Politics. “If Democrats selected someone with less enthusiastic backing, a lot of women who supported Biden may have stayed home.”

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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SIKESTON, Mo. — At age 79, Nannetta Forrest, whose father, Cleo Wright, was lynched in Sikeston, Missouri, before she was born, wonders how the decades-long silence that surrounded his death in 1942 influenced her life.

In 2020, Sikeston police killed another young Black man, 23-year-old Denzel Taylor. Taylor’s shooting death immediately made local headlines, but then the cycle of silence in Sikeston repeated itself.

Host Cara Anthony and pediatrician Rhea Boyd draw health parallels between the loss experienced by two families nearly 80 years apart. In both cases, young daughters were left behind to grapple with unanswered questions and devastating loss.

“Regardless of the age, children experience longing,” Boyd said. “They miss people when they don’t see them again; even babies can experience that.”

[Editor’s note: A swear word is bleeped out in this episode. The time stamp is 12:03.]

HostCara AnthonyMidwest correspondent, KFF Health News@CaraRAnthony Read Cara's storiesCara is an Edward R. Murrow and National Association of Black Journalists award-winning reporter from East St. Louis, Illinois. Her work has appeared in The New York Times, Time magazine, NPR, and other outlets nationwide. Her reporting trip to the Missouri Bootheel in August 2020 launched the “Silence in Sikeston” project. She is a producer on the documentary and the podcast’s host.In Conversation With …Rhea BoydPediatrician and public health scholarclick to open the transcriptTranscript: Trauma Lives in the BodyEditor’s note: If you are able, we encourage you to listen to the audio of “Silence in Sikeston,” which includes emotion and emphasis not found in the transcript. This transcript, generated using transcription software, has been edited for style and clarity. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.

[Solemn instrumental music begins playing softly.]

Cara Anthony: When Nannetta Forrest was growing up, a lot went unsaid in her family.

Nannetta Forrest: You know, people didn’t do a lot of talking back then. And it was almost like trying to pull teeth out of a hen.

Cara Anthony: She lived nearly her whole life in Indiana, but Nannetta’s story — the secrets and the silence — all started in Sikeston, Missouri.

Nannetta was born there in 1942. Several months earlier, while her mother was pregnant, Nannetta’s father was lynched.

His name … was Cleo Wright.

Nannetta Forrest: He was taken away before I got here!

Cara Anthony: Taken from a jail cell. Taken and dragged through the streets by a white mob. Taken to Sunset Addition, the center of Black life in Sikeston, and lynched. Taken from his family.

Nannetta’s mother kept quiet. She never wanted her daughter to know what happened to her father.

But one day, Nannetta was with her grandfather. A game show that aired on CBS in the 1950s was on TV. It was called “Strike it Rich.”

[Clip from “Strike it Rich” begins playing.]

“Strike It Rich” clip: Mr. “Strike It Rich” himself, Warren Hull. [Applause]

Nannetta Forrest: Celebrities would go on, and they’d try to win money for, like, underprivileged people.

“Strike It Rich” clip: Thanks a lot!

Nannetta Forrest: And that’s when Grandpa told me, he said, “You can go on there, Nan.” And I said, “Go on there with what?” And that’s when he went in his wallet and pulled out this yellow piece of paper.

[Solemn instrumental music plays.]

Cara Anthony: It was a newspaper clipping about the lynching of her father.

Nannetta Forrest: And that was my first time ever becoming aware of it.

Cara Anthony: It was around 1955. Nannetta was 13 or 14 at the time.

Nannetta Forrest: I did wanna know the story behind it, what happened, but nobody seemed to wanna talk about it.

Cara Anthony: Over the years, she pieced together bits of what happened. But there was always one nagging question that didn’t have an answer:

What would her life have been like if that mob hadn’t lynched her dad?

Nannetta Forrest: Now, I do often wonder that. Had he been alive when I was born and been in my life, what type of person would I have been? Would I have been the same person? Would I have been a different person? And this is something I’ll never know.

Cara Anthony: I’m Cara Anthony. I’m a health reporter.

I’ve traveled to Sikeston, Missouri, for years, asking people about the killing of Cleo Wright — and the silence that surrounds his death.

Nearly eight decades after the killing, that silence was still stifling. Like generations of stuffed-down fear and anger.

At nearly every turn, locals refused to talk to me. In fact, many people felt they could not talk to me. Until I met … Mikela Jackson.

[Solemn instrumental music fades out.]

Mikela Jackson: It’s … it’s … it’s no healing from grief. It’s an everyday thing for me.

Cara Anthony: Mikela goes by Keke. She’s in her mid-20s. But she’s heard about the lynching back in 1942.

Cara Anthony: Talk to me a little bit about that. Have you ever heard of Cleo Wright?

Mikela Jackson: Denzel brung that up to me. Denzel brung it up to me because we used to live on Sunset Street, and he was telling me, like, they dragged him through Sunset.

Cara Anthony: “Denzel” is Denzel Taylor, Keke’s fiancé.

Sikeston police shot him at least 18 times — and killed Denzel in April 2020. He was 23 years old.

That year, everyone was talking about new research that found that a Black man had a 1-in-1,000 chance of being killed by police.

Denzel Taylor became that 1 in a thousand.

[Sparse, minor music plays quietly.]

Right in the middle of her grief, Keke refused to be quiet.

Mikela Jackson: The Bootheel knows what happened to him. The world, they have no idea who Denzel Taylor is.

Cara Anthony: The Bootheel is where Sikeston sits — in the far southeast corner of Missouri.

Mikela Jackson: So that’s why I want his story … I wanna make him proud, actually. ’Cuz I want him to know, look, Babe, they going to hear this one way or another.

Cara Anthony: I made a film about the deaths of Denzel and Cleo — two Black men killed decades apart — in the same community.

For the documentary, we explored questions about the impact of racial trauma and the persistent harm it causes.

Here, for the podcast, we’re exploring another layer.How does systemic racial violence impact health? The health of Black people, in particular?

[“Silence in Sikeston” theme begins playing.]

Denzel’s story reminds me so much of Cleo’s. So many things about their lives — and their deaths — are similar.

They both left behind a daughter they never got to meet.

They both were killed by a public health threat of their time.

A threat toBlack men of their time.

For Cleo, that was lynching.

For Denzel, it was police violence.

Neither of them got their day in court.

In this episode, we’re looking at what happened to Denzel Taylor.

We’re exploring police violence as a public health problem. One that’s making us sick and cutting lives short.

From WORLD Channel and KFF Health News, and distributed by PRX, this is “Silence in Sikeston,” the podcast about finding the words to say the things that go unsaid.

Episode 3: “Trauma Lives in the Body.”

[“Silence in Sikeston” theme ends.]

[Gentle, bright instrumental music plays.]

Cara Anthony: Denzel was from Chicago. Growing up, he spent time in southeastern Missouri with his dad’s family.

Denzel and Keke met in Sikeston. And Keke says they fell in love immediately.

Mikela Jackson: It was a butterfly feeling, like you could just tell it was love. It was the best energy ever.

Cara Anthony: They started their family. De’nia was born first. Denzel used to call her “Cupcake.”

Denzel Taylor: Hey, Cupcake. Say hey, y’all. I love you, princess. [Baby babbles.]

Cara Anthony: Aiyana came next. In 2020, Keke was pregnant with their third daughter, Brookelynn.

Mikela Jackson: He said he wanted seven kids. I said, Denzel, what? He wanted seven kids. That’s a basketball team. I can’t handle that.

Cara Anthony: They were planning to get married after Brookelynn was born.

Mikela Jackson: I really wanted a big family with Denzel. I wanted to get married. I wanted to go to D- … We was planning on moving to Dallas and everything and it’s just like, my whole world is just like, it just blew up on me.

Cara Anthony: Remember 2020? It felt like the news was full of stories about Black people getting killed by police.

Videos from body cameras were all over social media. Around that same time, Keke remembers Denzel getting pulled over by police more and more.

And, Keke says, he started to become convinced that someday he might be killed by police too.

Mikela Jackson: He said if he was to ever get in any type of interaction with the police, he would let them kill him just to show how America is.

He would bring it up, like, outta nowhere. And he would say it, and I would wonder, like, why is you constantly saying it? And I kind of will get irritated because it’s, like, that’s not a way that I will want you to go out. Like, we’re supposed to grow old together.

Cara Anthony: On April 29 that year, Denzel’s premonition came true.

Police body cameras captured what happened the night Denzel was killed.

You’re about to hear a retelling of what happened the night Denzel died — based on interviews with his family and audio pulled from those body cam videos.

When I first got the videos, I stared at the attachments in my email for a long time. I didn’t want to look.

[Soft droning music fades in.]

But I think it’s important that we do look at what happened. It’s part of what I have to do to examine police killings as a public health threat.

Denzel was staying with his father and his stepmom.

[Rain sounds play.]

It was raining that night. Denzel and his dad, Milton Taylor, were stuck in the house together.

They got into an argument. Things escalated.

Denzel’s mom, Jean Kelly, was asleep in Chicago some 400 miles away. In the early hours of the morning, Denzel’s sister ran into her room yelling.

Jean Kelly: “Mom, wake up.” I said, “What happened?” She said, “Denzel just shot Daddy.” I said, “What? Denzel just shot Daddy? That doesn’t make any sense at all.”

EMS audio: 49-year-old. Male. Gunshot wound. Two to three shots to the chest. Five officers on scene.

Cara Anthony: By the time police arrived at Milton’s home, Denzel had left. EMTs stabilized Milton and took him to the hospital.

EMS audio: We’re running hot. St. Francis. One patient.

Cara Anthony: Meanwhile, up in Chicago, Jean is trying to figure out what’s going on. She calls Milton’s wife, Denzel’s stepmom.

Jean Kelly: She said she had a couple of family members out looking for Denzel, you know, because she was saying, “I want them to find him before the police finds him.”

Cara Anthony: Police are speaking with Denzel’s stepmom when he appears.

The body-camera video shows the scene from an officer’s perspective.

[Music fades out.]

Cara Anthony: By now, it’s stopped raining. A streetlamp lights up the end of the block. Police had wrapped the area in yellow police tape. The camera shows Denzel standing in the near distance on the other side of the yellow tape. He’s wearing a hoodie.

Officers: Show me your hands now! Take your hand out of your pocket!

Denzel Taylor: Just kill me, bro.

Jean Kelly: They were saying, uh, “Put your hands up” or whatever the, the, they said to him, and there was some words exchanged. And, uh, it sounded like he said, “Well, shoot me, bro. Just go ahead, shoot me.”

Cara Anthony: The officers fire their guns.

Jean Kelly: They hit my son one time, I believe, if not two, and my son fell. He went, he dropped to his knees and fell face down.

Cara Anthony: There’s a pause. It’s just a moment or two, but as I watch it, it feels longer.

And then, the police fire again, sending bullets into his body on the ground. They keep shooting. You can hear dozens of shots.

Police body cam video: We got shots fired. We need EMS. We got one subject down, shots fired! Hands now! Hands! Hands!

Cara Anthony: One officer walks up — and uses his foot to roll Denzel the rest of the way onto his stomach. Denzel groans as the officer pins his arms behind his back and handcuffs him.

[Handcuffs click]

Cara Anthony: They search his body.

Police body cam video: Goddamn it.

Cara Anthony: Police don’t find a gun. Or any weapon. Just a piece of wood in his hoodie pocket.

Police body cam video: Are you [expletive] serious? He had a [expletive] stick of wood.

Cara Anthony: Police call for an ambulance.

EMS audio: … EMS respond to one subject shot. Time of page, 02 36.

Cara Anthony: On the body camera video, one officer points a flashlight in Denzel’s face.

Police body cam video: Why didn’t you just take your hand out of your pocket, man?

Cara Anthony: Minutes tick by. Red and blue police lights flash off the wet pavement. Denzel is still in the street, motionless.

[Ambulance sirens]

Cara Anthony: EMS arrive, but it’s too late. Denzel is dead.

Over the radio, the dispatcher calls for the coroner.

EMS audio: That’s yes, ma’am. Contact coroner. Ten-four.

[Somber instrumental music plays softly.]

Cara Anthony: Keke had been out of town. She got the call as she was driving back to Sikeston. The police had killed Denzel.

Mikela Jackson: And I said, “No, they did not. No, they did not.” I couldn’t believe it. It was heartbreaking.

Cara Anthony: A special prosecutor declined to file charges against the police officers who killed Denzel. The officers did not comment for this project. Sikeston Chief of Public Safety James McMillen says the officers believed Denzel was armed and that they were in fear for their life.

Denzel’s family sued the city of Sikeston. The city and the family reached a wrongful death settlement for $2 million. Close to half of it went to legal fees. Most of the rest of it will go to Denzel’s daughters.

Keke thinks a lot about how life goes on for the officers who killed Denzel.

Mikela Jackson: They still get to see their family every single day of their life. They still get to call their daughters. They still get to go home and tuck their kids into bed. Denzel can never do that ever, ever again.

I’m a forced single parent. I have to push through every single day.

Keke watched the body cam video over and over. But Denzel’s death just wouldn’t sink in. And she’s worried about their daughters.

Mikela Jackson: I hope they never see the video ’cause that’s traumatizing. ’Cause that’s their dad.

Cara Anthony: Eventually, Keke left Sikeston. She says there are too many memories of Denzel and what happened to him there.

On the day I visited her new home, it was just over a year after Denzel’s death.

[Cara and Keke laugh together in the background.]

Two-year-old Aiyana is napping in the next room. Keke has the youngest, Brookelynn, on her lap. And the oldest, De’nia, is … everywhere.

Right now, she’s zooming through the dining room on a scooter.

Cara Anthony: She just did, like, a trick, like a BMX. She’s BMXing in this apartment right now. Is she a daredevil?

Mikela Jackson: She do that all the time. [Laughter] Too much. No. No bike.

Cara Anthony: Eventually, De’nia parked her wheels and talked to me.

Cara Anthony: Let’s just get this started. Tell me your name again and how old you are.

De’nia: Four.

Cara Anthony: And what is your name?

De’nia: De’nia.

Cara Anthony: In my time as a health reporter, I’ve written a lot about the impact gun violence has on kids. I’ve gotten some training in how to talk to them about it on their level — without retraumatizing them.

Cara Anthony: Your mommy’s sitting here, and she said I have permission to ask you about your daddy.

De’nia: Daddy?

Cara Anthony: Do you miss your daddy?

De’nia: Yes.

Cara Anthony: Yeah? Where’s your daddy?

De’nia: I don’t know.

Cara Anthony: Yeah.

De’nia: He’s sleeping.

Cara Anthony: Hmm?

De’nia: He’s sleeping.

Cara Anthony: You said he’s sleeping?

De’nia: Yes.

Mikela Jackson: That’s what she say. She said, “My daddy’s sleeping.”

Cara Anthony: De’nia is trying to make sense of why her dad isn’t with them anymore. And Keke doesn’t know what to tell her.

Mikela Jackson: Like last night she actually woke up out of her sleep and she was crying and she was like, Mama, my daddy. And I didn’t know what to tell her because it’s, like, what do you tell a 4-year-old that they’re never ever going to see their dad again?

[Subtle instrumental music plays.]

Cara Anthony: I called a pediatrician, Rhea Boyd, to talk about what losing a parent to police violence could mean for kids like De’nia, Aiyana,  and Brookelynn.

Rhea Boyd: Regardless of the age, children experience longing. They miss people when they don’t see them again, even babies can experience that.

Cara Anthony: Losing a parent — especially to violence — can have a major impact on a child’s future health.

Rhea Boyd: Certain experiences, including the death of a parent, increases a child’s risk for certain physical health ailments, like heart disease, um, kind of neurologic ailments, like increased risk for Alzheimer’s. Mental health impairments, like increased risk for depression. And these are increased risks as they move into adulthood.

Cara Anthony: Study after study show the link, even though we don’t totally understand all the mechanisms.

Rhea Boyd: It’s not just innate to our biology. It’s because of the conditions in which Black folks have been forced to live.

Cara Anthony: Black people in the United States carry more stress throughout their lives than white people. That doesn’t change, even when they make more money.

Researchers have tied that stress to the racism we deal with in everyday interactions — and to the institutional racism that makes it harder for us to take care of ourselves and our families.

Black people age faster, get sicker, and die sooner than our white peers — and carrying chronic stress is a factor.

Rhea says police violence contributes to this, too.

Rhea Boyd: Police are a public institution. And when they disproportionately take the lives of Black folks, or disproportionately police Black neighborhoods, that has direct impacts on our lives, on our well-being.

Cara Anthony: Keke says, back when she was living in Sikeston, she felt anxious every time she saw police lights in her rearview mirror.

[Subtle instrumental music ends.]

Mikela Jackson: Now, it’s like, OK, here it go again. I’m getting pulled over. Because it, I’m, it’s, I’m used to it at this point. I’m used to it.

Cara Anthony: Used to it, maybe. But not numb to it.

Mikela Jackson: I can’t tell my kids, “Hey, don’t be scared when you get pulled over.” I can’t tell them that. ’Cause I’m still scared myself, even a year later. I’m still scared.

Cara Anthony: Rhea calls this “anticipatory stress.”

Rhea Boyd: Anticipatory stress means you carry a level of vigilance and worry and concern about things that might happen to you or your kids.

Cara Anthony: Children can pick up on what’s going on in these situations and can end up carrying that toxic stress, too.

Denzel Taylor’s mother, Jean Kelly, told me about the worry that comes with having a Black son in America. The fear that he could become that 1 in 1,000 Black men killed by police.

[Grand, angelic music plays in the background.]

Jean Kelly: [Singing] Lord, have mercy on me …

Cara Anthony: Jean says before Denzel’s death, her spirit was on alert, like she was bracing for something bad. And a tune kept playing over and over in her mind.

Jean Kelly: [Singing] Lord, have mercy on me. I said, Lord, have mercy on me.

I just needed his, I needed his mercy and his grace and strength and everything to prepare me for what was to be … whatever it was to be, I was going to need his mercy.

[Grand, angelic music fades out]

Cara Anthony: I know what Black people are dealing with today. But I can only imagine what it would have been like in 1942, when Cleo Wright was lynched.

Rhea Boyd: The type of control people had their kids and their body under constantly so that they weren’t the victim of that type of violence, I think, physiologically, it was likely so enormous that the intergenerational effects of that type of terror still live in our bodies as descendants of those who experienced it.

Cara Anthony: Research is starting to explore how living with this kind of terror could go beyond behaviors to something deeper: changing how our genes work.

[Bouncy instrumental music plays.]

Some of this research comes out of a field called “epigenetics.” It’s the idea that something you experience can change how the genes in your body are expressed.

And that can have huge impacts on your health: It could make you age quicker or be more prone to developing a disease like cancer.

And epigenetic research is looking into how things your ancestors experienced could also affect your health today.

A police shooting and a lynching.

Two Black men killed in the same town — nearly 80 years apart.

As I reported their stories, many people have asked why we’re examining the deaths of Cleo Wright and Denzel Taylor side by side.

After years of reporting on these deaths, I’ve decided, as a health reporter, I want to focus on is this: the trauma that remains after the violence against these men — the possible health effects for their families and their communities.

I want to better understand what the loss could mean for Cleo and Denzel’s daughters. Little girls growing up without their dad.

Cleo’s daughter, Nannetta Forrest, wasn’t born yet when her father was killed. When we last spoke a few years before she died, she was 78 years old. And she said she was still asking herself that question that had nagged at her, her whole life: Who would she have been?

Nannetta Forrest: Would I have been the same person? Would I have been a different person?

Cara Anthony: And Denzel’s girls: De’nia and Aiyana. And Brookelynn, who wasn’t born yet. Brookelynn might ask herself the same thing as she grows.

Mikela Jackson: She has no memories. She’s never seen him a day in her life. So it’s like, she’ll never know him, like, as a person. [Den’ia playing in the background]

Cara Anthony: Just like Nannetta, Denzel’s girls are facing higher risks of psychological and mental health problems … and the possibility that losing their father this way could change how their genes work.

[“Silence in Sikeston” theme begins playing.]

In the face of those risks and possibilities, Keke’s looking for ways to protect her daughters.

She’s moved them away from Sikeston to a city where she hopes they’ll have more peace.

She wants them to know all about their dad, and how much he loved them.

She wants them to know his voice.

Denzel Taylor: Hey, Cupcake!

Cara Anthony: It’s the opposite of silence. She wants them to be able to heal out loud.

On the next episode, we’re in Sikeston, where people are looking for ways to heal and move forward after the deaths of Cleo Wright and Denzel Taylor.

Pershard Owens: We got to look in the mirror and say, am I doing what I can to try and change the dynamic of Sikeston, even if it does hurt? That’s what we have to start doing.

Cara Anthony: Including the possibility for big changes — community-level, systemwide changes.

James McMillen: I get frustrated and I’m trying to direct that frustration into something that could actually work.

Cara Anthony: That’s next time, on the final episode of “Silence in Sikeston.”

[“Silence in Sikeston” theme ends.]

[Upbeat instrumental music plays.]

Cara Anthony: Thanks for listening to “Silence in Sikeston.”

Next, go watch the documentary — it’s a joint production from Retro Report and KFF Health News, presented in partnership with WORLD.

Subscribe to WORLD Channel on YouTube. That’s where you can find the film “Silence in Sikeston,” a Local, USA special.

This podcast is a co-production of WORLD Channel and KFF Health News and distributed by PRX.

It was produced with support from PRX and made possible in part by a grant from the John S. and James L. Knight Foundation.

The audio series was reported and hosted by me, Cara Anthony.

Zach Dyer and Taylor Cook are the producers.

Editing by Simone Popperl.

Taunya English is managing editor of the podcast.

Sound design, mixing, and original music by Lonnie Ro.

Podcast art design by Colin Mahoney and Tania Castro-Daunais.

Oona Zenda and Lydia Zuraw are the landing page designers.

Have you seen the amazing Sikeston photography? It’s from Michael B. Thomas.

And Lynne Shallcross is the photo editor.

Thank you to my vocal coach, Viki Merrick.

Music in this episode is from Epidemic Sound and BlueDot Sessions.

Additional audio from the CBS TV show “Strike It Rich” and Denzel Taylor’s family.

Some of the audio you’ll hear across the podcast is also in the film.

For that, special thanks to Adam Zletz, Matt Gettemeier, Roger Herr, and Philip Geyelin.

Kyra Darnton is executive producer at Retro Report.

I was a producer on the film.

Jill Rosenbaum directed the documentary.

Kytja Weir is national editor at KFF Health News.

WORLD Channel’s editor-in-chief and executive producer is Chris Hastings.

We’re keeping this conversation going on Instagram and X.

Tarena Lofton and Hannah Norman are engagement and social media producers for the show.

Help us get the word out about “Silence in Sikeston.”

Write a review or give us a quick rating wherever you listen to this podcast.

Thank you. It makes a difference.

Oh, yeah. And tell your friends in real life, too.

[Upbeat instrumental music ends.]

Credits

Taunya EnglishManaging editor@TaunyaEnglishTaunya is deputy managing editor for broadcast at KFF Health News, where she leads enterprise audio projects.Simone PopperlLine editor@simoneppprlSimone is broadcast editor at KFF Health News, where she shapes stories that air on Marketplace, NPR, and CBS News Radio, and she co-manages a national reporting collaborative.Zach DyerSenior producer@zkdyerZach is senior producer for audio with KFF Health News, where he supervises all levels of podcast production.Taylor CookAssociate producer@taylormcook7Taylor is an independent producer who does research, books guests, contributes writing, and fact-checks episodes for several KFF Health News podcasts.Lonnie RoSound designerLonnie Ro is an audio engineer and composer who brings audio stories to life through original music and expert sound design for platforms like Spotify, Audible, and KFF Health News.Additional Newsroom Support

Lynne Shallcross, photo editorOona Zenda, illustrator and web producerLydia Zuraw, web producerTarena Lofton, audience engagement producer Hannah Norman, visual producer and visual reporter Chaseedaw Giles, audience engagement editor and digital strategistKytja Weir, national editor Mary Agnes Carey, managing editor Alex Wayne, executive editorDavid Rousseau, publisher Terry Byrne, copy chief Gabe Brison-Trezise, deputy copy chief Tammie Smith, communications officer

The “Silence in Sikeston” podcast is a production of KFF Health News and WORLD. Distributed by PRX. Subscribe and listen on Apple Podcasts, Spotify, Amazon Music, iHeart, or wherever you get your podcasts.

Watch the accompanying documentary from WORLD, Retro Report, and KFF starting Sept. 16, here.

To hear other KFF Health News podcasts, click here.

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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In June 2019, Lija Greenseid handed Minnesota Gov. Tim Walz an empty vial of insulin that her 13-year-old daughter had painted gold.

Greenseid’s daughter has Type 1 diabetes, which means she requires daily injections of manufactured insulin to stay alive. The price of a single vial of insulin rose by about 1,200% between 1996 and 2018, and the gold vial was a reminder, Greenseid said, that this lifesaving pharmaceutical shouldn’t be as expensive as precious metal.

“What I heard is that that gold vial remained on his desk at the governor’s office, and he brought it up throughout that summer and fall when he was trying to talk to legislators to get them moving,” Greenseid said.

Ten months later, in April 2020, Walz signed the Alec Smith Insulin Affordability Act. The law was named after the 26-year-old Minnesotan whose 2017 death from rationing insulin became a catalyst for the patient advocates who turned the high cost of insulin in the U.S. into a national political priority.

Now it’s an issue in the presidential campaign. Both former President Donald Trump and Vice President Kamala Harris and her running mate, Walz, have sought to appeal to the nation’s 8.4 million insulin users and their families by touting policies that make insulin cheaper for some patients.

But advocates for diabetes patients fret that neither presidential candidate would go as far as Walz’s Minnesota law, which helps patients even if they are uninsured, despite the law being under legal attack by the drug industry.

The landscape on insulin pricing has already changed significantly in the past five years. One month after Walz signed the Minnesota law, the Trump administration announced a voluntary program for Medicare prescription drug plans to cap copayments for some insulin products at $35. Two years later, President Joe Biden signed a law requiring all Medicare drug plans to cap copayments for insulin at $35 a month.

Now, amid the current presidential campaign, Harris has proposed extending that $35 cap on insulin copayments to Americans with commercial health insurance.

The Trump campaign’s national press secretary, Karoline Leavitt, touted his efforts on prescription drug prices when he was in the White House, including approval of a pathway for prescription drugs to be imported from Canada as well as the voluntary $35 insulin Medicare copayment cap. But she did not offer new insulin-specific initiatives for his possible second stint as president.

“President Trump will finish what he started in his first term,” Leavitt wrote in a statement.

Copayment caps, which have been enacted by 25 states, are popular policies because they provide an immediate financial benefit that many patients see at the pharmacy, according to University of Southern California economist Neeraj Sood. They’re also relatively easy to implement.

But copayment caps don’t address the high list price of insulin itself, so uninsured patients don’t benefit from such rules. About 1 in 12 Americans lacked health insurance last year.

That’s what makes Minnesota’s insulin safety net different. The system has two parts: an emergency program that allows individuals to get a one-time, 30-day supply of insulin for $35, and a continuing need program that provides insulin to eligible patients for a year at no more than $50 for a 90-day supply.

By contrast, list prices for a 30-day supply of insulin can easily top $215, depending on the insulin.

The bill that created Minnesota’s program was bipartisan out of necessity. Republicans controlled the state Senate at the time, while the Minnesota Democratic-Farmer-Labor Party held the House and governor’s office.

Nicole Smith-Holt, whose son the bill was named after, watched in tears as it finally passed the state legislature in 2020.

“I was happy. I was relieved,” Smith-Holt said. “I was sad that it took Alec dying to get to the point where people could walk into the pharmacy and pick up their prescription for an affordable price.”

But because Minnesota’s program requires insulin manufacturers to provide the insulin, it has prompted a backlash from manufacturers. Pharmaceutical industry lobbying group PhRMA filed a lawsuit in 2020 to block the Minnesota law, arguing it violates the “takings clause” of the U.S. Constitution, which says private property can’t be taken for public use “without just compensation.”

That suit is ongoing, yet the state program is up and running and by the end of 2023 it had been used over 1,500 times.

PhRMA spokesperson Reid Porter said his group is committed to helping patients afford medicines. Insulin makers voluntarily dropped list prices last year and now offer patient assistance programs for affording the drugs. And the CEO of insulin maker Eli Lilly first proposed the voluntary Medicare copay cap Trump announced in 2020.

Porter said insulin costs have been driven up by insurance companies and pharmacy benefit managers, also known as PBMs — the middlemen between insurance plans or employers and drug manufacturers — when they pocket the discounts from the list price of drugs that they negotiate with manufacturers.

“Minnesota’s insulin program does not solve this problem and is unconstitutional,” Porter said. “This is not how the system should work, and why it’s critical that policymakers should prioritize reforming the PBM system, a solution that puts patient health over politics.”

In 2021, Sood co-authored a study that found that, despite insulin list prices rising between 2014 and 2018, income received by drugmakers decreased while increasing for intermediaries like PBMs and pharmacies.

In September, the Federal Trade Commission announced a lawsuit against the nation’s three biggest PBMs, alleging they created a system that inflated insulin prices. The companies denied the claims.

Jing Luo, a physician at the University of Pittsburgh, said that regardless of who wins in November he doesn’t expect existing insulin policies like Medicare’s popular copay cap to be rolled back, due in part to the advocacy of people like Smith-Holt and Greenseid.

“They’ve been really effective at tying high insulin prices with really bad, morally repugnant outcomes,” Luo said.

The key in Minnesota was including real stories, Greenseid said.

“We had enough real people who reached out and had conversations and helped to show politicians the extent of the problem,” Greenseid said, “and they listened.”

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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Boo! We scared you. Now it’s your turn to give our newsroom a scare. Submissions are now open for KFF Health News’ sixth annual Halloween haiku competition. KFF Health News has been publishing reader-submitted health care haikus for years and is on pins and needles to read how this spooky season inspires you. We want your best scary health care or health policy haiku. We’ll share favorites on our social media channels, and members of our staff will pick the winners, announced on Thursday, Oct. 31.

Rules:

• Submit your haiku to https://kffhealthnews.org/contact-haiku/ with the link to the related KFF Health News article.
• “Like” KFF Health News and California Healthline on Facebook, and follow @KFFHealthNews on the social platforms X, Instagram, and TikTok.
• (Optional) Include your X or Instagram handle in the submission and let us know if it’s OK to give you a shout-out on social media.
• Submit your haiku by 5 p.m. ET on Friday, Oct. 18.
• To win, the haiku should meet the following criteria:
  • Follow the format of a haiku (a three-line poem with 17 syllables, written in a 5/7/5-syllable count).
  • Contain information related to health care and/or health policy that follows the scary/Halloween theme.
  • Reference a KFF Health News story in the haiku — as a bonus.

Prizes:

The top three haikus will be announced with a custom comic illustration drawn by staff illustrator Oona Zenda and featured in the KFF Health News Morning Briefing. Chief Washington correspondent Julie Rovner will read the grand-prize winner on KFF Health News’ “What the Health?” podcast on Oct. 31, and we will give you a shout-out ― or hair-raising scream ― on our social media pages, with the hashtag #HealthCareScare.

2023 Halloween Haiku Contest Winners2022 Halloween Haiku Contest WinnersKFF 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, Calif. — California voters are considering whether to roll back some of the criminal justice reforms enacted a decade ago as concerns about mass incarceration give way to public anger over property crime and a fentanyl crisis that has plagued the state since the covid-19 pandemic hit.

Proposition 36, on the November ballot, would unwind portions of a 2014 initiative, known as Proposition 47, that reduced most shoplifting and drug possession offenses to misdemeanors that rarely carried jail time.

Critics say that has allowed criminality to flourish and given those suffering from addiction little incentive to break the cycle. The law also has become a political weapon for former President Donald Trump and other Republican politicians who have tried to tie it to Vice President Kamala Harris to paint her as soft on crime. As California attorney general she took no position on the issue.

Much of the Proposition 36 debate has focused on the increased penalties for shoplifting, but the drug policy changes are even more dramatic. In addition to boosting penalties for some drug crimes, the measure would create a new “treatment-mandated felony” that could be imposed on people who illegally possess what are called “hard” drugs, including fentanyl, heroin, cocaine, and methamphetamine, and have two or more prior convictions for certain crimes.

Those who admit to the new felony would be required to complete drug or mental health treatment, job training, or other programs intended to “break the cycle of addiction and homelessness.” Those who complete the treatment program would have their charges dismissed, while failure could bring three years in prison.

The measure has opponents, including Gov. Gavin Newsom, warning about renewing a “war on drugs” that once helped swell California’s prison population.

Supporters counter that stricter penalties are necessary as overdose deaths from fentanyl crowd morgues. They also point to studies showing that more than 75% of people experiencing chronic homelessness struggle with substance abuse or a severe mental illness.

“We crafted this not to move people into any kind of custody setting, but to incentivize them into treatment,” said Greg Totten, chief executive officer at the California District Attorneys Association and a spokesperson for the initiative’s supporters.

Totten and others cast the measure as a way to revive drug courts, which they say waned in effectiveness after Proposition 47 removed the stick from what had been a carrot-and-stick approach.

Drug courts are led by a judge with a specialized caseload, use a collaborative approach to promote rehabilitation, and have been found to be effective in California and nationwide. Participants in California had “significantly lower rates of recidivism,” according to a study in 2006 commissioned by the Judicial Council of California: 29% were rearrested compared with 41% of a group who didn’t receive treatment.

The Center for Justice Innovation, a nationwide research and reform group that grew out of the New York state court system, found that drug court caseloads dropped across California after Proposition 47.

Still, advocates who favor decriminalization challenge the idea that the approach is effective and say coerced treatment violates people’s rights. Meanwhile, Lenore Anderson, a co-author of Proposition 47, said “we cannot pretend that this sort of feel-good idea that we’re going to arrest and incarcerate out of it is going to work. It never has.”

Proposition 47 led to an increase in property crime, but there is no evidence that changes in drug arrests sparked any increases in crime, found a recent study by the nonprofit, nonpartisan Public Policy Institute of California.

The latest reform effort leaves many questions, said Darren Urada of the University of California-Los Angeles Integrated Substance Abuse Programs. He was the principal investigator on UCLA’s evaluation of an earlier attempt to promote treatment.

“When policies are properly implemented, treatment obtained through courts can help people. However, there are a lot of details here that are not clear, and therefore a lot of opportunities for this to go poorly,” Urada said.

For instance, the ballot measure doesn’t say what would happen to someone who enters treatment but relapses, as is common; how long they would have to complete the program; or what would constitute completion for someone in long-term treatment for mental illness or substance abuse.

Those details were deliberately left vague so that local experts like community corrections partnerships, which are already established under existing law, could decide what works best in their jurisdictions, Totten said.

Totten expects a range of approaches including diversion programs and inpatient and outpatient treatment, and that judges would be guided by the recommendations of treatment professionals.

“I’m hopeful that that will help people who are really struggling with addiction, living on the streets, who engage in petty theft and other crimes in order to support their habit — that it will be a doorway into treatment for them,” said Anna Lembke, a Stanford University addiction expert.

The November ballot measure also would allow judges to send drug dealers to state prisons instead of county jails and boost penalties for possessing fentanyl. It would make it easier to charge someone with murder if they provide illegal drugs that kill someone.

The changes could increase California’s prison population, currently about 90,000, and its county jail and community supervision population, currently around 250,000, each by “a few thousand people,” projects the state’s nonpartisan Legislative Analyst’s Office. Opponents of the measure project that the increase would be far higher: 65,000 people, most for drug offenses and most of them people of color.

Newsom, one of the initiative’s most outspoken critics, argues that the November ballot measure lacks any funding; would reduce the $800 million in Proposition 47 savings, much of which has gone to treatment and diversion programs; and would only aggravate an existing lack of treatment alternatives.

“Prop. 36 takes us back to the 1980s,” Newsom, a Democrat, said in August as he signed a package of 10 property crime bills that he and legislative leaders tout as an alternative to the broader ballot measure.

Yet, illustrating the contentiousness of the debate, the ballot measure has been endorsed by some Democratic leaders, including San Francisco Mayor London Breed, San Diego Mayor Todd Gloria, and San Jose Mayor Matt Mahan, who often highlight its treatment requirement.

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

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

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Federal officials resolved more than a decade ago to crack down on whopping government overpayments to private Medicare Advantage health insurance plans, which were siphoning off billions of tax dollars every year.

But Centers for Medicare & Medicaid Services officials have yet to demand any refunds — and over the years the private insurance plans have morphed into a politically potent juggernaut that has signed up more than 33 million seniors and is aggressively lobbying to stave off cuts.

Critics have watched with alarm as the industry has managed to deflate or deflect financial penalties and steadily gain clout in Washington through political contributions; television advertising, including a 2023 Super Bowl feature; and other activities, including mobilizing seniors. There’s also a revolving door, in which senior CMS personnel have cycled out of government to take jobs tied to the Medicare Advantage industry and then returned to the agency.

Sen. Chuck Grassley (R-Iowa) said Medicare Advantage fraud “is wasting taxpayer dollars to the tune of billions.”

“The question is, what’s CMS doing about it? The agency must tighten up its controls and work with the Justice Department to prosecute and recover improper payments,” Grassley said in a statement to KFF Health News. “Clearly that’s not happening, at least to the extent it should be.”

David Lipschutz, an attorney with the Center for Medicare Advocacy, a nonprofit public interest law firm, said policymakers have an unsettling history of yielding to industry pressure. “The health plans throw a temper tantrum and then CMS will back off,” he said.

Government spending on Medicare Advantage, which is dominated by big health insurance companies, is expected to hit $462 billion this year.

New details of the government’s failure to rein in Medicare Advantage overcharges are emerging from a Department of Justice civil fraud case filed in 2017 against UnitedHealth Group, the insurer with the most Medicare Advantage enrollees. The case is pending in Los Angeles. The DOJ has accused the giant insurer of cheating Medicare out of more than $2 billion by mining patient records to find additional diagnoses that added revenue while ignoring overcharges that might have reduced bills. The company denies the allegations and has filed a motion for summary judgment.

Records from the court case are surfacing as the Medicare Advantage industry ramps up spending on lobbying and public relations campaigns to counter mounting criticism.

While critics have argued for years that the health plans cost taxpayers too much, the industry also has come under fire more recently for allegedly scrimping on vital health care, even dumping hundreds of thousands of members whose health plans proved unprofitable.

“We recognize this is a critical moment for Medicare Advantage,” said Rebecca Buck, senior vice president of communications for the Better Medicare Alliance, which styles itself as “the leading voice for Medicare Advantage.”

Buck said initiatives aimed at slashing government payments may prompt health plans to cut vital services. “Seniors are saying loud and clear: They can’t afford policies that will make their health care more expensive,” she said. “We want to make sure Washington gets the message.”

AHIP, a trade group for health insurers, also has launched a “seven-figure” campaign to promote its view that Medicare Advantage provides “better care at a lower cost,” spokesperson Chris Bond said.

Revolving Door

CMS, the Baltimore-based agency that oversees Medicare, has long felt the sting of industry pressure to slow or otherwise stymie audits and other steps to reduce and recover overpayments. These issues often attract little public notice, even though they can put billions of tax dollars at risk.

In August, KFF Health News reported how CMS officials backed off a 2014 plan to discourage the health plans from overcharging amid an industry “uproar.” The rule would have required that insurers, when combing patients’ medical records to identify underpayments, also look for overcharges. Health plans have been paid billions of dollars through the data mining, known as “chart reviews,” according to the government.

The CMS press office declined to respond to written questions posed by KFF Health News. But in a statement, it called the agency a “good steward of taxpayer dollars” and said in part: “CMS will continue to ensure that the MA program offers robust and stable options for people with Medicare while strengthening payment accuracy so that taxpayer dollars are appropriately spent.”

Court records from the UnitedHealth case show that CMS efforts to tighten oversight stalled amid years of technical protests from the industry — such as arguing that audits to uncover overpayments were flawed and unfair.

In one case, Jeffrey Grant, a CMS official who had decamped for a job supporting Medicare Advantage plans, protested the audit formula to several of his former colleagues, according to a deposition he gave in 2018.

Grant has since returned to CMS and now is deputy director for operations at the agency’s Center for Consumer Information and Insurance Oversight. He declined to comment.

At least a dozen witnesses in the UnitedHealth case and a similar DOJ civil fraud case pending against Anthem are former ranking CMS officials who departed for jobs tied to the Medicare Advantage industry.

Marilyn Tavenner is one. She led the agency in 2014 when it backed off the overpayment regulation. She left in 2015 to head industry trade group AHIP, where she made more than $4.5 million during three years at the helm, according to Internal Revenue Service filings. Tavenner, who is a witness in the UnitedHealth case, had no comment.

And in October 2015, as CMS department chiefs were batting around ideas to crack down on billing abuses, including reinstating the 2014 regulation on data mining, the agency was led by Andy Slavitt, a former executive vice president of the Optum division of UnitedHealth Group. The DOJ fraud suit focuses on Optum’s data mining program.

In the legal proceedings, Slavitt is identified as a “key custodian regarding final decision making by CMS” on Medicare Advantage.

“I don’t have any awareness of that conversation,” Slavitt told KFF Health News in an email. Slavitt, who now helps run a health care venture capital firm, said that during his CMS tenure he “was recused from all matters related to UHG.”

‘Improper’ Payments

CMS officials first laid plans to curb escalating overpayments to the insurers more than a decade ago, according to documents filed in August in the UnitedHealth case.

In a January 2012 presentation, CMS officials estimated they had made $12.4 billion worth of “improper payments” to Medicare Advantage groups in 2009, mostly because the plans failed to document that patients had the conditions the government paid them to treat, according to the court documents.

As a remedy, CMS came up with an audit program that selected 30 plans annually, taking a sample of 201 patients from each. Medical coders checked to make sure patient files properly documented health conditions for which the plans had billed.

The 2011 audits found that five major Medicare Advantage chains failed to document from 12.3% to 25.8% of diagnoses, most commonly strokes, lung conditions, and heart disease.

UnitedHealth Group, which had the lowest rate of unconfirmed diagnoses, is the only company named in the CMS documents in the case file. The identities of the four other chains are blacked out in the audit records, which are marked as “privileged and confidential.”

In a May 2016 private briefing, CMS indicated that the health plans owed from $98 million to $163 million for 2011 depending on how the overpayment estimate was extrapolated, court records show.

But CMS still hasn’t collected any money. In a surprise action in late January 2023, CMS announced that it would settle for a fraction of the estimated overpayments and not impose major financial penalties until 2018 audits, which have yet to get underway. Exactly how much plans will end up paying back is unclear.

Richard Kronick, a former federal health policy researcher and a professor at the University of California-San Diego, said CMS has largely failed to rein in billions of dollars in Medicare Advantage overpayments.

“It is reasonable to think that pressure from the industry is part of the reason that CMS has not acted more aggressively,” Kronick said.

CMS records show that officials considered strengthening the audits in 2015, including by limiting health plans from conducting “home visits” to patients to capture new diagnosis codes. That didn’t happen, for reasons that aren’t clear from the filings.

In any case, audits for 2011 through 2015 “are not yet final and are subject to change,” CMS official Steven Ferraina stated in a July court affidavit.

“It’s galling to me that they haven’t recovered more than they have,” said Edward Baker, a whistleblower attorney who has studied the issue.

“The government needs to be more aggressive in oversight and enforcement of the industry,” he said.

Senior CMS official Cheri Rice recommended in the October 2015 email thread with key staff that CMS could devote more resources to supporting whistleblowers who report overbilling and fraud.

“We think the whistleblower activity could be as effective – or even more effective – than CMS audits in getting plans to do more to prevent and identify risk adjustment overpayments,” Rice wrote.

But the handful of cases that DOJ could realistically bring against insurers cannot substitute for CMS fiscal oversight, Baker said.

“Unfortunately, that makes it appear that fraud pays,” he said.

Spending Surge

In December, a bipartisan group of four U.S. senators, including Bill Cassidy (R-La.), wrote to CMS to voice their alarm about the overpayments and other problems. “It’s unclear why CMS hasn’t taken stronger action against overpayments, despite this being a longstanding issue,” Cassidy told KFF Health News by email.

In January, Sen. Elizabeth Warren (D-Mass.) and Rep. Pramila Jayapal (D-Wash.) called for CMS to crack down, including by restricting use of chart reviews and home visits, known as health risk assessments, to increase plan revenues.

Cassidy, a physician, said that “upcoding and abuses of chart review and health risk assessments are well-known problems CMS could address immediately.”

Advocates for Medicare Advantage plans, whose more than 33 million members comprise over half of people eligible for Medicare, worry that too much focus on payment issues could harm seniors. Their research shows most seniors are happy with the care they receive and that the plans typically cost them less out-of-pocket than traditional Medicare.

Buck, the spokesperson for the Better Medicare Alliance, said that as the annual open enrollment period starts in mid-October, seniors may see “fewer benefits and fewer plan choices.”

The group has ramped up total spending in recent years to keep that from happening, IRS filings show.

In 2022, the most recent year available, the Better Medicare Alliance reported expenses of $23.1 million, including more than $14 million on advertising and promotion, while in 2023, it paid for a Super Bowl ad featuring seniors in a bowling alley and left viewers with the message: Cutting Medicare Advantage was “nuts.”

Bruce Vladeck, who ran CMS’ predecessor agency from 1993 through 1997, said that when government officials first turned to Medicare managed care groups in the 1990s, they quickly saw health plans enlist members to help press their agenda.

“That is different from most other health care provider groups that lobby,” Vladeck said. “It’s a political weapon that Medicare Advantage plans have not been at all reluctant to use.”

The Better Medicare Alliance reported lobbying on 18 bills this year and last, according to OpenSecrets. Some are specific to Medicare Advantage, such as one requiring insurers to report more detailed data about treatments and services and another to expand the benefits they can offer, while others more broadly concern health care costs and services.

Proposed reforms aside, CMS appears to believe that getting rid of health plans that allegedly rip off Medicare could leave vulnerable seniors in the lurch.

Testifying on behalf of CMS in a May 2023 deposition in the UnitedHealth Group suit, former agency official Anne Hornsby said some seniors might not “find new providers easily.” Noting UnitedHealth Group is the single biggest Medicare Advantage contractor, she said CMS “is interested in protecting the continuity of care.”

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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KFF Health News Midwest correspondent Cara Anthony discussed healing from racial trauma on “America’s Heroes Group” on Sept. 20.

• Click here to watch Anthony on “America’s Heroes Group”
• Explore Anthony’s series on the topic, “Silence in Sikeston”

KFF Health News contributor Andy Miller discussed Medicaid expansion in Georgia on WUGA’s “The Georgia Health Report” on Sept. 20.

• Click here to hear Miller on “The Georgia Health Report”
• Read Renuka Rayasam and Sam Whitehead’s “The First Year of Georgia’s Medicaid Work Requirement Is Mired in Red Tape”

KFF Health News senior correspondent Aneri Pattani discussed the series “Payback: Tracking the Opioid Settlement Cash,” a finalist for a Scripps Howard Journalism Award, on Scripps News’ “Morning Rush” on Sept. 19.

• Click here to hear Pattani on “Morning Rush”
• Read Pattani’s series, “Payback: Tracking the Opioid Settlement Cash”

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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There’s a new morning ritual in Pinedale, Wyoming, a town of about 2,000 nestled against the Wind River Mountains.

Friends and neighbors in the oil- and gas-rich community “take their morning coffee and pull up” to watch workers building the county’s first hospital, said Kari DeWitt, the project’s public relations director.

“I think it’s just gratitude,” DeWitt said.

Sublette County is the only one in Wyoming — where counties span thousands of square miles — without a hospital. The 10-bed, 40,000-square-foot hospital, with a similarly sized attached long-term care facility, is slated to open by the summer of 2025.

DeWitt, who also is executive director of the Sublette County Health Foundation, has an office at the town’s health clinic with a window view of the construction.

Pinedale’s residents have good reason to be excited. New full-service hospitals with inpatient beds are rare in rural America, where declining population has spurred decades of downsizing and closures. Yet, a few communities in Wyoming and others in Kansas and Georgia are defying the trend.

“To be honest with you, it even seems strange to me,” said Wyoming Hospital Association President Eric Boley. Small rural “hospitals are really struggling all across the country,” he said.

There is no official tally of new hospitals being built in rural America, but industry experts such as Boley said they’re rare. Typically, health-related construction projects in rural areas are for smaller urgent care centers or stand-alone emergency facilities or are replacements for old hospitals.

About half of rural hospitals lost money in the prior year, according to Chartis, a health analytics and consulting firm. And nearly 150 rural hospitals have closed or converted to smaller operations since 2010, according to data collected by the University of North Carolina’s Cecil G. Sheps Center for Health Services Research.

To stem the tide of closures, Congress created a new rural emergency hospital designation that allowed struggling hospitals to close their inpatient units and provide only outpatient and emergency services. Since January 2023, when the program took effect, 32 of the more than 1,700 eligible rural hospitals — from Georgia to New Mexico — have joined the program, according to data from the Centers for Medicare & Medicaid Services.

Tony Breitlow is health care studio director for EUA, which has extensive experience working for rural health care systems. Breitlow said his national architecture and engineering firm’s work expands, replaces, or revamps older buildings, many of which were constructed during the middle of the last century.

The work, Breitlow said, is part of health care “systems figuring out how to remain robust and viable.”

Freeman Health System, based in Joplin, Missouri, announced plans last year to build a new 50-bed hospital across the state line in Kansas. Paula Baker, Freeman’s president and chief executive, said the system is building for patients in the southeastern corner of the state who travel 45 minutes or more to its bigger Joplin facilities for care.

Freeman’s new hospital, with construction on the building expected to begin in the spring, will be less than 10 miles away from an older, 64-bed hospital that has existed for decades. Kansas is one of more than a dozen states with no “certificate of need” law that would require health providers to obtain approval from the state before offering new services or building or expanding facilities.

Baker also said Freeman plans to operate emergency services and a small 10-bed outpost in Fort Scott, Kansas, opening early next year in a corner of a hospital that closed in late 2018. Residents there “cried, they cheered, they hugged me,” Baker said, adding that the “level of appreciation and gratitude that they felt and they displayed was overwhelming to me.”

Michael Topchik, executive director of the Chartis Center for Rural Health, said regional health care systems in the Upper Midwest have been particularly active in competing for patients by, among other things, building new hospitals.

And while private corporate money can drive construction, many rural hospital projects tap government programs, especially those supported by the U.S. Department of Agriculture, Topchik said. That, he said, “surprises a lot of people.”

Since 2021, the USDA’s rural Community Facilities Programs have awarded $2.24 billion in loans and grants to 68 rural hospitals for work that was not related to an emergency or disaster, according to data analyzed by KFF Health News and confirmed by the agency. The federal program is funded through what is often known as the farm bill, which faces a September congressional renewal deadline.

Nearly all the projects are replacements or expansions and updates of older facilities.

The USDA confirmed that three new or planned Wyoming hospitals received federal funding. Hospital projects in Riverton and Saratoga received loans of $37.2 million and $18.3 million, respectively. Pinedale’s hospital received a $29.2 million loan from the agency.

Wyoming’s new construction is rare in a state where more than 80% of rural hospitals reported losses in the third quarter of 2023, according to Chartis. The state association’s Boley said he worries about several hospitals that have less than 10 days’ cash on hand “day and night.”

Pinedale’s project loan was approved after the community submitted a feasibility study to the USDA that included local clinics and a long-term care facility. “It’s pretty remote and right up in the mountains,” Boley said.

Pinedale’s DeWitt said the community was missing key services, such as blood transfusions, which are often necessary when there is a trauma like a car crash or if a pregnant woman faces severe complications. Local ambulances drove 94,000 miles last year, she said.

DeWitt began working to raise support for the new hospital after her own pregnancy-related trauma in 2014. She was bleeding heavily and arrived at the local health clinic believing it operated like a hospital.

“It was shocking to hear, ‘No, we’re not a hospital. We can’t do blood transfusions. We’re just going to have to pray you live for the next 45 minutes,’” DeWitt said.

DeWitt had to be airlifted to Idaho, where she delivered a few minutes after landing. When the hospital financing went on the ballot in 2020, DeWitt — fully recovered, with healthy grade-schoolers at home — began making five calls a night to rally support for a county tax increase to help fund the hospital.

“By improving health care, I think we improve everybody’s chances of survival. You know, it’s pretty basic,” DeWitt 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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In a campaign ad this month, Derek Tran, a Democrat from Orange County, California, blasted his opponent, Republican U.S. Rep. Michelle Steel, for supporting a national abortion ban and voting to limit access to birth control.

Democratic challenger Will Rollins also called out his rival, Rep. Ken Calvert, and “MAGA extremists” in an ad last week for their backing of a bill that could criminalize medical practitioners who provide abortions.

A few blocks from state Route 14 in Lancaster, about 70 miles north of downtown Los Angeles, Rep. Mike Garcia’s Democratic opponent, George Whitesides, planted two billboards promising to protect reproductive health care, a jab at the Republican congressman, who has voted to cut taxpayer funding of abortions for service members and other Americans.

As Election Day approaches, Democratic hopefuls are doing all they can to tie Republican opponents in contested congressional districts to their anti-abortion records. Aggressive ads are going up in California, Arizona, Nebraska, New Jersey, New York, and Oregon, as Democrats see an opportunity to take control of the House by engaging voters who might not vote straight-ticket — or at all. Republicans currently control the House by a slim margin.

“What we all need to do is to make sure we look at her record, and that record is contrary to what she’s putting out there in her ads,” Tran said in an interview about Steel. “We’re making sure that we educate and remind the voters of who she really is.”

Democrats are also linking Republican incumbents to former President Donald Trump, who has taken credit for the 2022 Supreme Court decision overturning Roe v. Wade. Democrats are warning voters that more restrictions could come. During the Sept. 10 presidential debate, Trump dodged a question about whether he would veto a national abortion ban if elected.

A majority of voters support restoring a federal right to abortion, according to a recent KFF poll. And 1 in 14 voters say abortion is the most important issue in determining their choice. Those voters have the potential to make a difference in the close races, said David McCuan, a political science professor at Sonoma State University.

“The politics of abortion and reproductive health can get voters to participate at higher rates,” McCuan said. “It’s going to be a defining issue.”

Democrats are hoping the issue plays to their favor in California. Voters two years ago codified abortion rights into state law. In May, Planned Parenthood Affiliates of California launched a seven-figure campaign targeting seven Republican seats and Democrat Katie Porter’s open seat.

As a result, political analysts say, Republicans have shied away from their votes on abortion and some incumbents — such as Steel, Garcia, and Central Valley U.S. Rep. David Valadao — have moderated their stances to appeal to voters.

Steel, like Garcia and Valadao, has said she supports exceptions to abortion bans in cases of rape, incest, or threats to the life of the mother. All three co-sponsored a bill amounting to a blanket abortion ban in the previous Congress. Garcia and Valadao left their names off the bill last year, but Steel signed on again as a co-sponsor — briefly.

She withdrew her support after she won her March primary, explaining that it could create confusion because the three-page bill could threaten in vitro fertilization. In a September campaign ad, Steel shared that she had used IVF to have children and reiterated her support for the procedure. Steel spokesperson Lance Trover said she opposes a national abortion ban.

None of the Republican incumbents who represent a California “toss-up” district, as determined by the nonpartisan Cook Political Report, granted KFF Health News an interview. Those who did respond said they do not support a national abortion ban.

Rep. John Duarte added that he opposes a ban because he’s “pro-choice,” and Calvert said “the issue is best decided with the states and their voters directly.” Both voted for a bill to limit medication abortion and supported a measure that would have authorized prison time for medical providers who don’t resuscitate babies born after an attempted abortion.

Tim Rosales, a political strategist who has represented Republican candidates, said these incumbents shouldn’t get heat for changing their minds over time, noting that Democratic former Presidents Bill Clinton and Barack Obama reversed their positions on same-sex marriage.

“There has to be some allowance for evolution on a variety of issues,” Rosales said.

Ben Petersen, a spokesperson for the National Republican Congressional Committee, said Democrats who have called out Republicans for inconsistencies want to move the conversation away from other topics, such as the “disastrous cost of living crisis hurting women and families caused by their one-party control of Sacramento.”

This political dance is playing out on the national stage, especially in battleground races where Republicans find themselves on defense in states where abortion is on the ballot. Roughly two dozen races are considered toss-ups.

In a March post on the social platform X, Republican Nebraska Rep. Don Bacon wrote, “I’ve always defended the life of the mother,” after his Democratic rival, Tony Vargas, called him out for supporting a national abortion ban, which makes no exceptions for cases in which the mother’s life is at risk. That same month, Rolling Stone reported that the Omaha-area congressman had deleted some anti-abortion endorsements from his website. Nebraskans will vote this November on competing abortion ballot measures.

In Arizona, where voters will also be asked whether to enshrine abortion rights into the state constitution, Republican incumbent David Schweikert this year did not support a national abortion ban, which he had co-sponsored at least six times from 2012 to 2021. In April, he wrote on X that he opposed an abortion ban in Arizona, calling on the state legislature to “address this issue immediately.”

On the airwaves, on their websites, and on the campaign trail, Republican candidates are pivoting to convince voters that they have voted to protect women. For example, Steel this month released an ad titled “Champion,” in which the Orange County sheriff says Steel has “worked tirelessly to protect victims of domestic violence and sexual abuse.”

Trover, the Steel spokesperson, said she voted two years ago to reauthorize the Violence Against Women Act. That vote was on a larger $1.5 trillion government spending bill, which included the measure.

The year before, Steel voted against reauthorizing the act.

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

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

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The HostJulie RovnerKFF 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.Congress has left Washington for the campaign trail, but after the Nov. 5 general election lawmakers will have to complete work on the annual spending bills for the fiscal year that starts Oct. 1. While the GOP had hoped to push spending decisions into 2025, Democrats forced a short-term spending patch that’s set to expire before Christmas.

Meanwhile, on the campaign trail, abortion continues to be among the hottest issues. Democrats are pressing their advantage with women voters while Republicans struggle — with apparently mixed effects — to neutralize it.

This week’s panelists are Julie Rovner of KFF Health News, Joanne Kenen of Politico and the Johns Hopkins schools of nursing and public health, Alice Miranda Ollstein of Politico, and Lauren Weber of The Washington Post.

PanelistsJoanne KenenJohns Hopkins University and Politico@JoanneKenen Read Joanne's stories.Alice Miranda OllsteinPolitico@AliceOllstein Read Alice's stories.Lauren WeberThe Washington Post@LaurenWeberHP Read Lauren's stories.Among the takeaways from this week’s episode:

• When Congress returns after the election, there’s a chance lawmakers could then make progress on government spending and more consensus health priorities, like expanding telehealth access. After all, after the midterm elections in 2022, Congress passed federal patient protections against surprise medical billing.
• As Election Day approaches, Democrats are banging the drum on health care — which polls show is a winning issue for the party with voters. This week, Democrats made a last push to extend Affordable Care Act subsidies expanded during the pandemic — an issue that will likely drag into next year in the face of Republican opposition.
• The outcry over the first reported deaths tied to state abortion bans seems to be resonating on the campaign trail. With some states offering the chance to weigh in on abortion access via ballot measures, advocates are telling voters: These tragedies are examples of what happens when you leave abortion access to the states.
• And Sen. Bernie Sanders of Vermont summoned the chief executive of Novo Nordisk before the health committee he chairs this week to demand accountability for high drug prices. Despite centering on a campaign issue, the hearing — like other examples of pharmaceutical executives being thrust into the congressional hot seat — yielded no concessions.

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

Julie Rovner: KFF Health News’ “Across North Carolina, Medical Debt Exacts a Heavy Toll,” by Ames Alexander, The Charlotte Observer, and Noam N. Levey.

Lauren Weber: Stat’s “How the Next President Should Reform Medicare,” by Paul Ginsburg and Steve Lieberman.

Joanne Kenen: The Atlantic’s “The Woo-Woo Caucus Meets,” by Elaine Godfrey.

Alice Miranda Ollstein: Stat’s “How Special Olympics Kickstarted the Push for Better Disability Data,” by Timmy Broderick.

Also mentioned on this week’s podcast:

• KFF Health News’ “Florida’s New Covid Booster Guidance Is Straight-Up Misinformation,” by Arthur Allen, Daniel Chang, and Sam Whitehead.
• KFF Health News’ “Feds Killed Plan To Curb Medicare Advantage Overbilling After Industry Opposition,” by Fred Schulte.
• KFF Health News’ “Audits — Hidden Until Now — Reveal Millions in Medicare Advantage Overcharges,” by Fred Schulte and Holly K. Hacker.
• KFF Health News’ “ACA Plans Are Being Switched Without Enrollees’ OK,” by Julie Appleby.
• KFF Health News’ “Biden Administration Tightens Broker Access to Healthcare.gov To Thwart Rogue Sign-Ups,” by Julie Appleby.

CreditsFrancis YingAudio producerEmmarie Huetteman Editor To hear all our podcasts, click here.

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

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

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We want to hear from you. Share your thoughts, feelings, and questions about our “Silence in Sikeston” project here. (Fewer than 300 words, please.)(Required)Do you want to break the silence about an issue in your community? Tell us about it. We also want to know if “Silence in Sikeston” inspired you. “Silence in Sikeston” is the start of a conversation about racism and health — where should that discussion go next? (Fewer than 300 words, please.)Please provide your name and email address so we can reach out to talk further.Name(Required) First Last Email (will not be shared and will be used only by KFF Health News)(Required) Enter email Confirm email Phone number (will not be shared and will be used only by KFF Health News)Where do you live? City State / Province / Region What is your age?Would you be willing to have your full name published in a news story?(Required)YesNoNameThis field is for validation purposes and should be left unchanged. Δ

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Tim Sheehy “would let politicians like him ban abortion, with no exceptions for rape or to save a woman’s life, and criminalize women.”

A Facebook ad from the campaign of Sen. Jon Tester (D-Mont.), launched on Sept. 6, 2024

In a race that could decide control of the U.S. Senate, Sen. Jon Tester (D-Mont.) is attacking his challenger, Republican Tim Sheehy, for his stance on abortion.

Montana’s Senate race is one of a half-dozen tight contests around the country in which Democrats are defending seats needed to keep their one-seat majority. If Republicans flip Tester’s seat, they could take over the chamber even if they fail to oust Democrats in any other key races.

In a series of Facebook ads launched in early September, Tester’s campaign said Sheehy supports banning abortion with no exceptions.

An ad launched on Sept. 6 said, “Tim Sheehy wants to take away the freedom to choose what happens with your own body, and give that power to politicians. Sheehy would let politicians like him ban abortion, with no exceptions for rape or to save a woman’s life, and criminalize women. We can’t let Tim Sheehy take our freedom away.”

Sheehy’s Anti-Abortion Stance Allows for Rape, Health Exceptions

Sheehy’s website calls him “proudly pro-life,” and he’s campaigning against abortion. He opposes a measure on Montana’s November ballot that would amend the Montana Constitution to provide the right to “make and carry out decisions about one’s own pregnancy, including the right to abortion.”

In July, we rated False Sheehy’s statement that Tester and other Democrats have voted for “elective abortions up to and including the moment of birth. Healthy, 9-month-year-old baby killed at the moment of birth.”

But contrary to the new ad’s message, Sheehy has voiced support for exceptions.

In a Montana Public Radio interview in May, Sheehy was asked, “Yes or no, do you support a federal ban on abortion?”

Sheehy said, “I am proudly pro-life and support commonsense protections for when a baby can feel pain, as well as exceptions for rape, incest, and the life of the mother, and I believe any further limits must be left to each state.”

And in a June debate with Tester, Sheehy said, “I’ll always protect the three rights for women: rape, incest, life of the mother.”

The issues section of Sheehy’s campaign website does not say that he has a no-exceptions stance, nor does it say he would “criminalize women” who have abortions.

In a statement, the Sheehy campaign told PolitiFact that the ad mischaracterizes Sheehy’s abortion position. Allowing no exceptions “has never been Tim’s position,” the campaign said.

Our Ruling

The Tester campaign’s ad says Sheehy “would let politicians like him ban abortion, with no exceptions for rape or to save a woman’s life, and criminalize women.”

Sheehy has said he supports abortion ban exceptions for rape or to save a pregnant woman’s life. We found no instances of him saying he would be OK with states criminalizing women who receive abortions in violation of state laws.

What gives the ad a kernel of truth is that Sheehy has voiced support for letting states decide abortion parameters within their borders. The Tester campaign argues that this means Sheehy would effectively enable legislators to pass abortion restrictions that don’t include exceptions or that criminalize women.

The Tester campaign’s argument relies on hypotheticals and ignores Sheehy’s stated support for exceptions, giving a misleading impression of Sheehy’s position.

We rate it Mostly False.

Our SourcesJon Tester, Facebook ad, Sept. 6, 2024

Tim Sheehy, campaign issues page, accessed Sept. 12, 2024

KFF, “Policy Tracker: Exceptions to State Abortion Bans and Early Gestational Limits,” last updated July 29, 2024

Montana Public Radio, “Q&A: Tim Sheehy, Republican Candidate for U.S. Senate,” May 15, 2024

Montana Senate debate (excerpt), June 9, 2024

Last Best Place PAC, “choice” web page, accessed Sept. 12, 2024

Montana Republican Party, 2024 platform, accessed Sept. 12. 2024

Daily Montanan, “Sheehy criticizes ballot measures, including initiative to protect abortion,” Aug. 22, 2024

Sabato’s Crystal Ball, “Where Abortion Rights Will (or Could) Be on the Ballot,” July 9, 2024

Heartland Signal, “Unearthed audio shows Tim Sheehy calling abortion ‘sinful,’ wanting it to ‘end tomorrow,’” Aug. 30, 2024

Montana Independent, “Jon Tester accuses Tim Sheehy of lying about abortion during first Senate campaign debate,” June 11, 2024

Statement to PolitiFact from the Sheehy campaign

Statement to PolitiFact from the Tester campaign

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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One evening in May, nursing assistant Debra Ragoonanan’s vision blurred during her shift at a state-run Massachusetts veterans home. As her head spun, she said, she called her husband. He picked her up and drove her to the emergency room, where she was diagnosed with a brain aneurysm.

It was the latest in a drumbeat of health issues that she traces to the first months of 2020, when dozens of veterans died at the Soldiers’ Home in Holyoke, in one of the country’s deadliest covid-19 outbreaks at a long-term nursing facility. Ragoonanan has worked at the home for nearly 30 years. Now, she said, the sights, sounds, and smells there trigger her trauma. Among her ailments, she lists panic attacks, brain fog, and other symptoms of post-traumatic stress disorder, a condition linked to aneurysms and strokes.

Scrutiny of the outbreak prompted the state to change the facility’s name to the Massachusetts Veterans Home at Holyoke, replace its leadership, sponsor a $480 million renovation of the premises, and agree to a $56 million settlement for veterans and families. But the front-line caregivers have received little relief as they grapple with the outbreak’s toll.

“I am retraumatized all the time,” Ragoonanan said, sitting on her back porch before her evening shift. “How am I supposed to move forward?”

Covid killed more than 3,600 U.S. health care workers in the first year of the pandemic. It left many more with physical and mental illnesses — and a gutting sense of abandonment.

What workers experienced has been detailed in state investigations, surveys of nurses, and published studies. These found that many health care workers weren’t given masks in 2020. Many got covid and worked while sick. More than a dozen lawsuits filed on behalf of residents or workers at nursing facilities detail such experiences. And others allege that accommodations weren’t made for workers facing depression and PTSD triggered by their pandemic duties. Some of the lawsuits have been dismissed, and others are pending.

Health care workers and unions reported risky conditions to state and federal agencies. But the federal Occupational Safety and Health Administration had fewer inspectors in 2020 to investigate complaints than at any point in a half-century. It investigated only about 1 in 5 covid-related complaints that were filed officially, and just 4% of more than 16,000 informal reports made by phone or email.

Nursing assistants, health aides, and other lower-wage health care workers were particularly vulnerable during outbreaks, and many remain burdened now. About 80% of lower-wage workers who provide long-term care are women, and these workers are more likely to be immigrants, to be people of color, and to live in poverty than doctors or nurses.

Some of these factors increased a person’s covid risk. They also help explain why these workers had limited power to avoid or protest hazardous conditions, said Eric Frumin, formerly the safety and health director for the Strategic Organizing Center, a coalition of labor unions.

He also cited decreasing membership in unions, which negotiate for higher wages and safer workplaces. One-third of the U.S. labor force was unionized in the 1950s, but the level has fallen to 10% in recent years.

Like essential workers in meatpacking plants and warehouses, nursing assistants were at risk because of their status, Frumin said: “The powerlessness of workers in this country condemns them to be treated as disposable.”

In interviews, essential workers in various industries told KFF Health News they felt duped by a system that asked them to risk their lives in the nation’s moment of need but that now offers little assistance for harm incurred in the line of duty.

“The state doesn’t care. The justice system doesn’t care. Nobody cares,” Ragoonanan said. “All of us have to go right back to work where this started, so that’s a double whammy.”

‘A War Zone’

The plight of health care workers is a problem for the United States as the population ages and the threat of future pandemics looms. Surgeon General Vivek Murthy called their burnout “an urgent public health issue” leading to diminished care for patients. That’s on top of a predicted shortage of more than 3.2 million lower-wage health care workers by 2026, according to the Mercer consulting firm.

The veterans home in Holyoke illustrates how labor conditions can jeopardize the health of employees. The facility is not unique, but its situation has been vividly described in a state investigative report and in a report from a joint oversight committee of the Massachusetts Legislature.

The Soldiers’ Home made headlines in March 2020 when The Boston Globe got a tip about refrigerator trucks packed with the bodies of dead veterans outside the facility. About 80 residents died within a few months.

The state investigation placed blame on the home’s leadership, starting with Superintendent Bennett Walsh. “Mr. Walsh and his team created close to an optimal environment for the spread of COVID-19,” the report said. He resigned under pressure at the end of 2020.

Investigators said that “at least 80 staff members” tested positive for covid, citing “at least in part” the management’s “failure to provide and require the use of proper protective equipment,” even restricting the use of masks. They included a disciplinary letter sent to one nursing assistant who had donned a mask as he cared for a sick veteran overnight in March. “Your actions are disruptive, extremely inappropriate,” it said.

To avoid hiring more caretakers, the home’s leadership combined infected and uninfected veterans in the same unit, fueling the spread of the virus, the report found. It said veterans didn’t receive sufficient hydration or pain-relief drugs as they approached death, and it included testimonies from employees who described the situation as “total pandemonium,” “a nightmare,” and “a war zone.”

Because his wife was immunocompromised, Walsh didn’t enter the care units during this period, according to his lawyer’s statement in a deposition obtained by KFF Health News. “He never observed the merged unit,” it said.

In contrast, nursing assistants told KFF Health News that they worked overtime, even with covid, because they were afraid of being fired if they stayed home. “I kept telling my supervisor, ‘I am very, very sick,’” said Sophia Darkowaa, a nursing assistant who said she now suffers from PTSD and symptoms of long covid. “I had like four people die in my arms while I was sick.”

Nursing assistants recounted how overwhelmed and devasted they felt by the pace of death among veterans whom they had known for years — years of helping them dress, shave, and shower, and of listening to their memories of war.

“They were in pain. They were hollering. They were calling on God for help,” Ragoonanan said. “They were vomiting, their teeth showing. They’re pooping on themselves, pooping on your shoes.”

Nursing assistant Kwesi Ablordeppey said the veterans were like family to him. “One night I put five of them in body bags,” he said. “That will never leave my mind.”

Four years have passed, but he said he still has trouble sleeping and sometimes cries in his bedroom after work. “I wipe the tears away so that my kids don’t know.”

High Demands, Low Autonomy

A third of health care workers reported symptoms of PTSD related to the pandemic, according to surveys between January 2020 and May 2022 covering 24,000 workers worldwide. The disorder predisposes people to dementia and Alzheimer’s. It can lead to substance use and self-harm.

Since covid began, Laura van Dernoot Lipsky, director of the Trauma Stewardship Institute, has been inundated by emails from health care workers considering suicide. “More than I have ever received in my career,” she said. Their cries for help have not diminished, she said, because trauma often creeps up long after the acute emergency has quieted.

Another factor contributing to these workers’ trauma is “moral injury,” a term first applied to soldiers who experienced intense guilt after carrying out orders that betrayed their values. It became common among health care workers in the pandemic who weren’t given ample resources to provide care.

“Folks who don’t make as much money in health care deal with high job demands and low autonomy at work, both of which make their positions even more stressful,” said Rachel Hoopsick, a public health researcher at the University of Illinois at Urbana-Champaign. “They also have fewer resources to cope with that stress,” she added.

People in lower income brackets have less access to mental health treatment. And health care workers with less education and financial security are less able to take extended time off, to relocate for jobs elsewhere, or to shift careers to avoid retriggering their traumas.

Such memories can feel as intense as the original event. “If there’s not a change in circumstances, it can be really, really, really hard for the brain and nervous system to recalibrate,” van Dernoot Lipsky said. Rather than focusing on self-care alone, she pushes for policies to ensure adequate staffing at health facilities and accommodations for mental health issues.

In 2021, Massachusetts legislators acknowledged the plight of the Soldiers’ Home residents and staff in a joint committee report saying the events would “impact their well-being for many years.”

But only veterans have received compensation. “Their sacrifices for our freedom should never be forgotten or taken for granted,” the state’s veterans services director, Jon Santiago, said at an event announcing a memorial for veterans who died in the Soldiers’ Home outbreak. The state’s $56 million settlement followed a class-action lawsuit brought by about 80 veterans who were sickened by covid and a roughly equal number of families of veterans who died.

The state’s attorney general also brought criminal charges against Walsh and the home’s former medical director, David Clinton, in connection with their handling of the crisis. The two averted a trial and possible jail time this March by changing their not-guilty pleas, instead acknowledging that the facts of the case were sufficient to warrant a guilty finding.

An attorney representing Walsh and Clinton, Michael Jennings, declined to comment on queries from KFF Health News. He instead referred to legal proceedings in March, in which Jennings argued that “many nursing homes proved inadequate in the nascent days of the pandemic” and that “criminalizing blame will do nothing to prevent further tragedy.”

Nursing assistants sued the home’s leadership, too. The lawsuit alleged that, in addition to their symptoms of long covid, what the aides witnessed “left them emotionally traumatized, and they continue to suffer from post-traumatic stress disorder.”

The case was dismissed before trial, with courts ruling that the caretakers could have simply left their jobs. “Plaintiff could have resigned his employment at any time,” Judge Mark Mastroianni wrote, referring to Ablordeppey, the nursing assistants’ named representative in the case.

But the choice was never that simple, said Erica Brody, a lawyer who represented the nursing assistants. “What makes this so heartbreaking is that they couldn’t have quit, because they needed this job to provide for their families.”

‘Help Us To Retire’

Brody didn’t know of any cases in which staff at long-term nursing facilities successfully held their employers accountable for labor conditions in covid outbreaks that left them with mental and physical ailments. KFF Health News pored through lawsuits and called about a dozen lawyers but could not identify any such cases in which workers prevailed.

A Massachusetts chapter of the Service Employees International Union, SEIU Local 888, is looking outside the justice system for help. It has pushed for a bill — proposed last year by Judith García, a Democratic state representative — to allow workers at the state veterans home in Holyoke, along with its sister facility in Chelsea, to receive their retirement benefits five to 10 years earlier than usual. The bill’s fate will be decided in December.

Retirement benefits for Massachusetts state employees amount to 80% of a person’s salary. Workers qualify at different times, depending on the job. Police officers get theirs at age 55. Nursing assistants qualify once the sum of their time working at a government facility and their age comes to around 100 years. The state stalls the clock if these workers take off more than their allotted days for sickness or vacation.

Several nursing assistants at the Holyoke veterans home exceeded their allotments because of long-lasting covid symptoms, post-traumatic stress, and, in Ragoonanan’s case, a brain aneurysm. Even five years would make a difference, Ragoonanan said, because, at age 56, she fears her life is being shortened. “Help us to retire,” she said, staring at the slippers covering her swollen feet. “We have bad PTSD. We’re crying, contemplating suicide.”

I got my funeral dress out because the way everybody was dying, I knew I was going to die.

Debra Ragoonanan

Certain careers are linked with shorter life spans. Similarly, economists have shown that, on average, people with lower incomes in the United States die earlier than those with more. Nearly 60% of long-term care workers are among the bottom earners in the country, paid less than $30,000 — or about $15 per hour — in 2018, according to analyses by the Department of Health and Human Services and KFF, a health policy research, polling, and news organization that includes KFF Health News.

Fair pay was among the solutions listed in the surgeon general’s report on burnout. Another was “hazard compensation during public health emergencies.”

If employers offer disability benefits, that generally entails a pay cut. Nursing assistants at the Holyoke veterans home said it would halve their wages, a loss they couldn’t afford.

“Low-wage workers are in an impossible position, because they’re scraping by with their full salaries,” said John Magner, SEIU Local 888’s legal director.

Despite some public displays of gratitude for health care workers early in the pandemic, essential workers haven’t received the financial support given to veterans or to emergency personnel who risked their lives to save others in the aftermath of 9/11. Talk show host Jon Stewart, for example, has lobbied for this group for over a decade, successfully pushing Congress to compensate them for their sacrifices.

“People need to understand how high the stakes are,” van Dernoot Lipsky said. “It’s so important that society doesn’t put this on individual workers and then walk away.”

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KFF Health News Midwest correspondent Cara Anthony sat down with WORLD executive producer Chris Hastings to discuss the origins of the “Silence in Sikeston” project, which explores the impact of a 1942 lynching and a 2020 police shooting on a rural Missouri community. The collaboration with Retro Report includes a documentary film, educational videos, digital articles, and a limited-series podcast on the toll racism has on health.

For more on the “Silence in Sikeston” project:

WATCH: The documentary film “Silence in Sikeston,” a co-production of KFF Health News and Retro Report, is now available to stream on WORLD’s YouTube channel, WORLDchannel.org and the PBS app.

LISTEN: The limited-series podcast

• Episode 1: “Racism Can Make You Sick”

The 1942 lynching of Cleo Wright in Sikeston, Missouri, and conversations with one of the few remaining witnesses launch a discussion about the health consequences of racism and violence in the United States. Host Cara Anthony speaks with history scholar Eddie R. Cole and racial equity scholar Keisha Bentley-Edwards about the physical, mental, and emotional burdens on Sikeston residents and Black Americans in general.

• Episode 2: “Hush, Fix Your Face”

Racial violence is an experience shared by residents of Sikeston, Missouri, and many Black Americans. Staying silent in the face of this threat is a survival tradition families have passed down to their children to keep them safe. After host Cara Anthony uncovers details of a police killing in her family, she and psychologist Aiesha Lee discuss the silence that surrounds racism and its effects on health across generations — including the reverberations Anthony and her family live with today.

• To catch the upcoming episodes, subscribe and listen on PRX, Apple Podcasts, Spotify, iHeart, or wherever you get your podcasts.

READ: KFF Health News Midwest correspondent Cara Anthony wrote an essay about what her reporting on this project helped her learn about her own family’s hidden past.

• “No One Wants To Talk About Racial Trauma. Why My Family Broke Our Silence.”

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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Sara McGinnis was pregnant with her second child and something felt off. Her body was swollen. She was tired and dizzy.

Her husband, Bradley McGinnis, said she had told her doctor and nurses about her symptoms and even went to the emergency room when they worsened. But, Bradley said, what his wife was told in response was, “‘It’s summertime and you’re pregnant.’ That haunts me.”

Two days later, Sara had a massive stroke followed by a seizure. It happened on the way to the hospital, where she was headed again due to a splitting headache.

Sara, from Kalispell, Montana, never met her son, Owen, who survived through an emergency delivery and has her oval eyes and thick dark hair. She died the day after he was born.

Sara had eclampsia, a sometimes deadly pregnancy complication caused by persistent high blood pressure, also known as hypertension. High blood pressure makes the heart work in overdrive, which can damage organs.

Sara died in 2018. Today, more pregnant people are being diagnosed with dangerously high blood pressure, a finding that could save their lives. Recent studies show the rates of newly developed and chronic maternal high blood pressure have roughly doubled since 2007. Researchers say the jump in cases is likely due in part to more testing that discovers the conditions.

But that’s not the whole story. Data shows that the overall maternal mortality rate in the U.S. is also climbing, with high blood pressure one of the leading causes.

Medical experts are trying to stem the tide. In 2022, the American College of Obstetricians and Gynecologists lowered the threshold for when doctors should treat pregnant and postpartum patients for high blood pressure. And federal agencies offer training in best practices for screening and care. Federal data shows that maternal deaths from high blood pressure declined in Alaska and West Virginia after implementation of those guidelines. But applying those standards to everyday care takes time, and hospitals are still working to incorporate practices that might have saved Sara’s life.

In Montana, which last year became one of 35 states to implement the federal patient safety guidelines, more than two-thirds of hospitals provided patients with timely care, said Annie Glover, a senior research scientist with the Montana Perinatal Quality Collaborative. Starting in 2022, just over half of hospitals met that threshold.

“It just takes some time in a hospital to implement a change,” Glover said.

High blood pressure can damage a person’s eyes, lungs, kidneys, or heart, with consequences long after pregnancy. Preeclampsia — consistent high blood pressure in pregnancy — can also lead to a heart attack. The problem can develop from inherited or lifestyle factors: For example, being overweight predisposes people to high blood pressure. So does older age, and more people are having babies later in life.

Black and Indigenous people are far more likely to develop and die from high blood pressure in pregnancy than the general population.

“Pregnancy is a natural stress test,” said Natalie Cameron, a physician and an epidemiologist with Northwestern University’s Feinberg School of Medicine, who has studied the rise in high blood pressure diagnoses. “It’s unmasking this risk that was there all the time.”

But pregnant women who don’t fit the typical risk profile are also getting sick, and Cameron said more research is needed to understand why.

Mary Collins, 31, of Helena, Montana, developed high blood pressure while pregnant this year. Halfway through her pregnancy, Collins still hiked and attended strength training classes. Yet, she felt sluggish and was gaining weight too rapidly while her baby’s growth slowed drastically.

Collins said she was diagnosed with preeclampsia after she asked an obstetrician about her symptoms. Just before that, she said, the doctor had said all was going well as he checked her baby’s development.

“He pulled up my blood pressure readings, did a physical assessment, and just looked at me,” Collins said. “He was like, ‘Actually, I’ll take back what I said. I can easily guarantee that you’ll be diagnosed with preeclampsia during this pregnancy, and you should buy life flight insurance.’”

Indeed, Collins was airlifted to Missoula, Montana, for the delivery and her daughter, Rory, was born two months early. The baby had to spend 45 days in a neonatal intensive care unit. Both Rory, now about 3 months old, and Collins are still recovering.

The typical cure for preeclampsia is delivering the baby. Medication can help prevent seizures and speed up the baby’s growth to shorten pregnancy if the health of the mother or fetus warrants a premature delivery. In rare cases, preeclampsia can develop soon after delivery, a condition researchers still don’t fully understand.

Wanda Nicholson, chair of the U.S. Preventive Services Task Force, an independent panel of experts in disease prevention, said steady monitoring is needed during and after a pregnancy to truly protect patients. Blood pressure “can change in a matter of days, or in a 24-hour period,” Nicholson said.

And symptoms aren’t always clear-cut.

That was the case for Emma Trotter. Days after she had her first child in 2020 in San Francisco, she felt her heartbeat slow. Trotter said she called her doctor and a nurse helpline and both told her she could go to an emergency room if she was worried but advised her that it wasn’t needed. So she stayed home.

In 2022, about four days after she delivered her second child, her heart slowed again. That time, the care team in her new home of Missoula checked her vitals. Her blood pressure was so high the nurse thought the monitor was broken.

“‘You could have a stroke at any second,’” Trotter recalled her midwife telling her before sending her to the hospital.

Trotter was due to have her third child in September, and her doctors planned to send her and the new baby home with a blood pressure monitor.

Stephanie Leonard, an epidemiologist at Stanford University School of Medicine who studies high blood pressure in pregnancy, said more monitoring could help with complex maternal health problems.

“Blood pressure is one component that we could really have an impact on,” she said. “It’s measurable. It’s treatable.”

More monitoring has long been the goal. In 2015, the federal Health Resources and Services Administration worked with the American College of Obstetricians and Gynecologists to roll out best practices to make birth safer, including a specific guide to scan for and treat high blood pressure. Last year the federal government boosted funding for such efforts to expand implementation of those guides.

“So much of the disparity in this space is about women’s voices not being heard,” said Carole Johnson, head of the health resources agency.

The Montana Perinatal Quality Collaborative spent a year providing that high blood pressure training to hospitals across the state. In doing so, Melissa Wolf, the head of women’s services at Bozeman Health, said her hospital system learned that doctors’ use of its treatment plan for high blood pressure in pregnancy was “hit or miss.” Even how nurses checked pregnant patients’ blood pressure varied.

“We just assumed everyone knew how to take a blood pressure,” Wolf said.

Now, Bozeman Health is tracking treatment with the goal that any pregnant person with high blood pressure receives appropriate care within an hour. Posters dot the hospitals’ clinic walls and bathroom doors listing the warning signs for preeclampsia. Patients are discharged with a list of red flags to watch for.

Katlin Tonkin is one of the nurses training Montana medical providers on how to make birth safer. She knows how important it is from experience: In 2018, Tonkin was diagnosed with severe preeclampsia when she was 36 weeks pregnant, weeks after she had developed symptoms. Her emergency delivery came too late and her son Dawson, who hadn’t been getting enough oxygen, died soon after his birth.

Tonkin has since had two more sons, both born healthy, and she keeps photos of Dawson, taken during his short life, throughout her family’s home.

“I wish I knew then what I know now,” Tonkin said. “We have the current evidence-based practices. We just need to make sure that they’re in place.”

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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When Preston Nafz was 12, he asked his dad for permission to play lacrosse.

“First practice, he came back, he said, ‘Dad, I love it,’” recalled his father, Lothar Nafz, of Hoover, Alabama. “He lives for lacrosse.”

But years of youth sports took a toll on Preston’s body. By the time the teenager limped off the field during a lacrosse tournament last year, the pain in his left hip had become so intense that he had trouble with simple activities, such as getting out of a car or turning over in bed. Months of physical therapy and anti-inflammatory drugs didn’t help.

Not only did he have to give up sports, but “I could barely do anything,” said Preston, now 17.

The Medical Procedure

A doctor recommended Preston undergo a procedure called a sports hernia repair to mend damaged tissue in his pelvis, believed to be causing his pain.

The sports medicine clinic treating Preston told Lothar that the procedure had no medical billing code — an identifier that providers use to charge insurers and other payers. It likely would be a struggle to persuade their insurer to cover it, Lothar was told, which is why he needed to pay upfront.

With his son suffering, Lothar said, the surgery “needed to be done.” He paid more than $7,000 to the clinic and the surgery center with a personal credit card and a medical credit card with a zero-interest rate.

Preston underwent surgery in November, and his father filed a claim with their insurer, hoping for a full reimbursement. It didn’t come.

The Final Bill

$7,105, which broke down as $480 for anesthesia, a $625 facility fee, and $6,000 for the surgery.

The Billing Problem: No CPT Code

Before the surgery, Lothar said, he called Blue Cross and Blue Shield of Alabama and was encouraged to learn that his policy typically covers most medical, non-cosmetic procedures.

But during follow-up phone calls, he said, insurance representatives were “deflecting, trying to wiggle out.” He said he called several times, getting a denial just before the surgery.

Lothar said he trusted his son’s doctor, who showed him research indicating the surgery works. The clinic, Andrews Sports Medicine and Orthopaedic Center, has a good reputation in Alabama, he said.

Other medical providers not involved in the case called the surgery a legitimate treatment.

A sports hernia — also known as an “athletic pubalgia” — is a catchall phrase to describe pain that athletes may experience in the lower groin or upper thigh area, said David Geier, an orthopedic surgeon and sports medicine specialist in Mount Pleasant, South Carolina.

“There’s a number of underlying things that can cause it,” Geier said. Because of that, there isn’t “one accepted surgery for that problem. That’s why I suspect there’s not a uniform CPT.”

CPT stands for “Current Procedural Terminology” and refers to the numerical or alphanumeric codes for procedures and services performed in a clinical or outpatient setting. There’s a CPT code for a rapid strep test, for example, and different codes for various X-rays.

The lack of a CPT code can cause reimbursement headaches, since insurers determine how much to pay based on the CPT codes providers use on claims forms.

More than 10,000 CPT codes exist. Several hundred are added each year by a special committee of the American Medical Association, explained Leonta Williams, director of education at AAPC, previously known as the American Academy of Professional Coders.

Codes are more likely to be proposed if the procedure in question is highly utilized, she said.

Not many orthopedic surgeons in the U.S. perform sports hernia repairs, Geier said. He said some insurers consider the surgery experimental.

Preston said his pain improved since his surgery, though recovery was much longer and more painful than he expected.

By the end of April, Lothar said, he’d finished paying off the surgery.

The Resolution: A billing statement from the surgery center shows that the CPT code assigned to Preston’s sports hernia repair was “27299,” which stands for “a pelvis or hip joint procedure that does not have a specific code.”

After submitting more documentation to appeal the insurance denial, Lothar received a check from the insurer for $620.26. Blue Cross and Blue Shield didn’t say how it came up with that number or which costs it was reimbursing.

Lothar said he has continued to receive confusing messages from the insurer about his claim.

Both the insurer and the sports medicine clinic declined to comment.

The Takeaway

Before you undergo a medical procedure, try to check whether your insurer will cover the cost and confirm it has a billing code.

Williams of the AAPC suggests asking your insurer: “Do you reimburse this code? What types of services fall under this code? What is the likelihood of this being reimbursed?”

Persuading an insurer to pay for care that doesn’t have its own billing code is difficult but not impossible, Williams said. Your doctor can bill insurance using an “unlisted code” along with documentation explaining what procedure was performed.

“Anytime you’re dealing with an unlisted code, there’s additional work needed to explain what service was rendered and why it was needed,” she said.

Some patients undergoing procedures without CPT codes may be asked to pay upfront. You can also offer a partial upfront payment, which may motivate your provider to team up to get insurance to pay.

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

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Californians with medical debt will no longer have to worry about unpaid medical bills showing up on their credit reports under legislation signed Tuesday by Gov. Gavin Newsom, adding the nation’s most populous state to a growing effort to protect consumers squeezed by unaffordable medical bills.

The bill, by Sen. Monique Limón (D-Santa Barbara) and backed by Democratic Attorney General Rob Bonta, will block health care providers, as well as any contracted collection agency, from sharing a patient’s medical debt with credit reporting agencies. At least eight states have banned medical bills from consumer credit reports in the past two years. In June, the Biden administration proposed similar federal protections, but it’s unclear when the rules will be enacted — or, if former President Donald Trump is elected again, if they will be at all.

“Nobody chooses to get sick, and then your credit gets ruined,” said Chi Chi Wu, a senior attorney with the National Consumer Law Center. “That’s why we encourage states to keep adopting laws. In case something goes wrong at the federal level, the states could protect their own consumers.”

When California’s new law goes into effect in January, it will extend these protections to credit reports used for employment and tenant screening, Wu said. This is in addition to the proposed federal ban on reporting to credit agencies that inform credit card companies and mortgage lenders.

California lawmakers noted that medical debt — unlike other kinds of debt — isn’t an accurate reflection of credit risk, and its inclusion can depress credit scores and make it hard for people to get a job, rent an apartment, or secure a car loan.

But California lawmakers have left a glaring loophole. Patients who pay hospital bills using medical credit cards or medical specialty loans — which can come with interest rates as high as 36% — won’t get that debt taken off their credit report, as residents of Colorado, Minnesota, and New York do. It’s a concession the financial industry won through late-in-the-game “hostile” amendments, which “influential entities opposed to the measure prevailed” in including, Limón said. In a 2022 KFF poll on medical debt, 15% of adults said they had used a medical credit card.

Kelly Parsons-O’Brien, legislative chair of the California Association of Collectors, which represents collection agencies, said the exemptions were essential because medical credit card holders can buy nonmedical items and medical loans can be refinanced with nonmedical debt, making it “impossible” for creditors to know what’s actually a medical charge.

“More consumers will get into situations where they cannot afford to pay, and lenders will be operating in the dark,” Parsons-O’Brien said.

The three largest U.S. credit agencies — Equifax, Experian, and TransUnion — said they would stop listing some medical debt, including paid-off debts and those less than $500, but millions of patients were left with bigger medical bills on their credit reports. The Consumer Financial Protection Bureau reported in April that 15 million Americans still had medical bills on their credit reports.

About 4 in 10 Californians report carrying some type of medical debt, which disproportionately affects low-income, Black, and Latino patients, according to the California Health Care Foundation.

Dozens of states have enacted legislation to protect consumers from surprise billing and medical debt, according to the National Conference of State Legislatures. Newsom, a Democrat, also signed legislation on Tuesday banning hospitals from using liens on all real property owned by Californians who typically earn less than 400% of the federal poverty level. It expands current state law that protects a patient’s home from debt collectors.

A KFF Health News analysis found that credit reporting is the most common collection tactic used by hospitals to get patients to pay their bills. A credit score ban might make it more difficult for hospitals to collect.

When Sacramento resident Sonia Hayden and her boyfriend applied for a home loan last year, she discovered her credit score had dropped about a hundred points. It had been downgraded because of an approximately $200 emergency room charge after a car accident years ago.

The 44-year-old said her insurance covered tens of thousands of dollars in medical bills but that the hospital miscoded the $200 charge and she never received a bill for it. That, she said, should also have been charged to insurance.

Hayden tried unsuccessfully for over a year to resolve the issue with her health insurer. It’s still on her credit report. She was eventually able to get a home loan, but her interest rates were higher because of her credit score.

“Medical bills, they’re not on purpose, you know?” said Hayden, who testified in support of the legislation. “It was already a super traumatic accident. I almost died. And then to have this super stressful medical bill — nobody’s asking for that. It shouldn’t affect your credit.”

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

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Uno de los dos programas de formación de enfermeras parteras de California ha dejado de admitir estudiantes mientras renueva su plan de estudios para ofrecer sólo doctorados, una medida que ha generado protestas de ex alumnos, expertos en políticas de salud y profesores que acusan a la Universidad de California (UC) de anteponer beneficios económicos a las necesidades de salud pública.

La prestigiosa escuela de enfermería de la UC-San Francisco graduará a su última promoción de enfermeras parteras la próxima primavera.

Luego, la universidad cancelará su programa de máster de dos años en enfermería obstétrica, junto con otras disciplinas de enfermería, en favor de un doctorado en enfermería de tres años, o DNP.

El cambio pondrá entre paréntesis la formación de enfermeras parteras que la UCSF ha impartido durante casi cinco décadas, al menos hasta 2025, y duplicará con creces el costo para los estudiantes.

Mia Bonta, legisladora de la Asamblea Estatal que preside el comité de salud, dijo que estaba “descorazonada” al saber que la UCSF cancelaba su programa de maestría en enfermería obstétrica y temía que el tiempo y los costos adicionales para obtener un doctorado disuadieran a futuros postulantes.

“En lugar de agregar obstáculos, tenemos que construir y ampliar un canal de proveedores cultural y racialmente competentes para apoyar la mejora de los resultados del parto, especialmente para las parturientas afroamericanas y latinas”, expresó Bonta en un correo electrónico.

El cambio a la formación doctoral forma parte de un movimiento nacional que exige que todas las enfermeras registradas de práctica avanzada, incluidas las enfermeras parteras y las especializadas, obtengan títulos de doctorado, según declaró Kristen Bole, vocera de la UCSF. La formación doctoral incluirá clases adicionales sobre liderazgo y mejora de la calidad en la atención.

Sin embargo, este movimiento, que se remonta a 2004, no se desarrolló de la forma que imaginó la Asociación Estadounidense de Facultades de Enfermería cuando pidió que, para 2015, tener un doctorado fuera obligatorio para practicar la enfermería especializada. Ese plazo se cumplió.

Ahora, la acuciante necesidad de profesionales de salud materna hace que algunas universidades se muevan en otra dirección.

Este año, la Universidad Rutgers restableció la formación de máster en enfermería obstétrica que había eliminado en 2016. La Universidad de Alabama-Birmingham también reinició su programa de máster en enfermería obstétrica en 2022, tras un paréntesis de 25 años. Además, la Universidad George Washington de Washington, DC, la Universidad Loyola de Nueva Orleans y la Universidad de Nevada-Las Vegas agregaron formación de máster en enfermería obstétrica.

La UCSF calcula que la matrícula y las tasas costarán $152,000 por un doctorado de tres años en obstetricia, frente a los $65,000 de un máster de dos años. Los estudios muestran que el 71% de los estudiantes de máster en enfermería y el 74% de los estudiantes de doctorado en enfermería dependen de préstamos estudiantiles, y las enfermeras con doctorado ganan igual o poco más que las que tienen un máster.

Kim Q. Dau, que dirigió el programa de enfermería obstétrica de la UCSF durante una década, dimitió en junio porque se sentía incómoda con la eliminación del máster en favor de un requisito de doctorado que, según dijo, contradice las necesidades de mano de obra del estado y es innecesario para la práctica clínica.

“Estarán igualmente preparadas clínicamente, pero a un costo mayor para el estudiante y con una mayor inversión de tiempo”, expresó Dau.

Las enfermeras parteras son enfermeras tituladas en enfermería obstétrica. Con licencia en los 50 estados, trabajan especialmente en hospitales y pueden practicar abortos y recetar medicamentos, aunque también están capacitadas para tratar el dolor del parto con duchas, masajes y otros medios naturales. En cambio, las parteras o comadronas tituladas estudian obstetricia a nivel de postgrado fuera de las escuelas de enfermería y sólo están autorizadas en algunos estados. Las parteras profesionales tituladas atienden partos fuera de los hospitales.

La Asociación de Enfermeras Obstetras de California también criticó el cambio de programa de la UCSF, que se produce en medio de una crisis nacional de mortalidad materna, una grave escasez de proveedores de obstetricia y una creciente dependencia de las parteras.

Según el informe “White House Blueprint for Addressing the Maternal Health Crisis” (Plan de la Casa Blanca para abordar la crisis de salud materna) de 2022, Estados Unidos tiene la tasa de mortalidad materna más alta de todos los países desarrollados y necesita miles de parteras más y otros proveedores de salud para la mujer que reduzcan la creciente brecha.

Ginger Breedlove, fundadora y CEO de Grow Midwives, una consultora nacional, comparó el cambio de la UCSF de la formación de máster a la de doctorado con “un terremoto”.

“¿Por qué estamos retrasando la entrada de proveedores de cuidados esenciales haciéndoles cursar un año más de estudios, que no agrega nada a su preparación clínica ni a su seguridad para servir a la comunidad?”, se preguntó Breedlove, ex presidenta del American College of Nurse-Midwives (ACNM, Colegio Profesional de Enfermeras Parteras). “Resulta incomprensible que hayan elegido hacer esto durante la peor escasez de mano de obra combinada con la peor crisis de salud materna que hemos tenido en 50 años”.

Un informe de 2020 publicado en Nursing Outlook no encontró que las enfermeras registradas de práctica avanzada con doctorados fueran más competentes clínicamente que las que tenían maestrías. “Por desgracia, hasta la fecha, los datos son escasos”, concluyó el informe.

El ACNM también denunció el requisito del doctorado, al igual que las asociaciones profesionales de enfermeras neonatales, citando “la falta de pruebas científicas de que… la formación a nivel de doctorado sea beneficiosa para los pacientes, los profesionales o la sociedad”.

Según Breedlove, no hay pruebas de que las enfermeras obstétricas con doctorado proporcionen mejores cuidados.

“Se busca beneficio económico, no un mejor resultado”, agregó.

Bole rebatió la acusación de lucro hecha por Breedlove. Consultada por las razones del cambio, ofreció declaraciones generales: “La decisión de actualizar nuestro programa se tomó para garantizar que nuestros graduados estén preparados para los retos a los que se enfrentarán en el cambiante campo de la salud”.

Al igual que Breedlove, Liz Donnelly, vicepresidenta del comité de políticas de salud de la Asociación de Enfermeras Parteras de California, teme que el cambio de la UCSF a un título de doctorado agrave la doble crisis de la mortalidad materna y la disminución del personal de obstetricia en California y en el país.

En promedio, de 10 a 12 enfermeras obstetras se han graduado del programa de maestría de la UCSF cada año durante la última década, según Bole. El programa de máster en enfermería obstétrica que queda en California está en la Universidad Estatal de California en Fullerton, (CSU-Fullerton), al sur de Los Angeles, en donde se graduaron ocho enfermeras obstétricas el año pasado, y 11 este año.

Más de la mitad de los condados rurales de Estados Unidos carecieron de atención obstétrica en 2018, según un informe de la Oficina de Rendición de Cuentas del Gobierno.

En algunas áreas de California, las futuras madres deben conducir dos horas para recibir atención, señaló Bethany Sasaki, quien dirige Midtown Nurse Midwives, un centro de nacimientos en Sacramento que ha tenido que dejar de aceptar nuevas pacientes porque no encuentra comadronas.

Donnelly predijo que el cierre del programa de la UCSF reducirá significativamente el número de enfermeras parteras que se incorporen al mercado laboral, e impedirá que las personas con menos recursos asistan al programa. “En concreto, creo que se reducirá el número de personas de color, de comunidades rurales y de comunidades pobres”, afirmó.

El cambio de la UCSF también afectará con toda probabilidad los esfuerzos por formar a proveedores con una herencia diversa.

Natasha, afropuertorriqueña, de 37 años y madre de dos hijos, lleva una década preparándose para ser enfermera partera y poder ayudar a mujeres como ella durante el embarazo y el parto. Pidió que sólo se la identificara por su nombre de pila por miedo a reducir sus posibilidades de ser admitida en una escuela de posgrado.

La pausa del programa de la UCSF, más el tiempo y los gastos que se suman para obtener un doctorado, han enturbiado su trayectoria profesional.

“El máster era el programa perfecto”, afirmó Natasha, que vive en la zona de la Bahía de San Francisco y no puede viajar al otro extremo del estado para asistir a CSU-Fullerton. “Estoy frustrada y me siento desmoralizada. Ahora tengo que buscar otra carrera”.

Esta historia fue producida por KFF Health News, que publica California Healthline, un servicio editorialmente independiente de la California Health Care Foundation.

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

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Finding a nursing home for yourself or a parent can be daunting. Many facilities are understaffed and the worker shortages have gotten worse since the start of the pandemic. KFF Health News senior correspondent Jordan Rau shares tips about finding nearby homes, evaluating staffing levels, what to look for when visiting, and more.

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CreditsHannah NormanVideo producerFrancis YingVideographerOona TempestIllustratorKFF 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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One of California’s two programs for training nurse-midwives has stopped admitting students while it revamps its curriculum to offer only doctoral degrees, a move that’s drawn howls of protest from alumni, health policy experts, and faculty who accuse the University of California of putting profits above public health needs.

UC-San Francisco’s renowned nursing school will graduate its final class of certified nurse-midwives next spring. Then the university will cancel its two-year master’s program in nurse-midwifery, along with other nursing disciplines, in favor of a three-year doctor of nursing practice, or DNP, degree. The change will pause UCSF’s nearly five decades-long training of nurse-midwives until at least 2025 and will more than double the cost to students.

State Assembly member Mia Bonta, who chairs the health committee, said she was “disheartened” to learn that UCSF was eliminating its master’s nurse-midwifery program and feared the additional time and costs to get a doctorate would deter potential applicants. “Instead of adding hurdles, we need to be building and expanding a pipeline of culturally and racially concordant providers to support improved birth outcomes, especially for Black and Latina birthing people,” she said in an email.

The switch to doctoral education is part of a national movement to require all advanced-practice registered nurses, including nurse-midwives and nurse practitioners, to earn doctoral degrees, Kristen Bole, a UCSF spokesperson, said in response to written questions. The doctoral training will feature additional classes in leadership and quality improvement.

But the movement, which dates to 2004, has not caught on the way the American Association of Colleges of Nursing envisioned when it called for doctorate-level education to be required for entry-level advanced nursing practice by 2015. That deadline came and went. Now, an acute need for maternal health practitioners has some universities moving in the other direction.

This year, Rutgers University reinstated the nurse-midwifery master’s training it had eliminated in 2016. The University of Alabama-Birmingham also restarted its master’s in nurse-midwifery program in 2022 after a 25-year hiatus. In addition, George Washington University in Washington, D.C., Loyola University in New Orleans, and the University of Nevada-Las Vagas added master’s training in nurse-midwifery.

UCSF estimates tuition and fees will cost $152,000 for a three-year doctoral degree in midwifery, compared with $65,000 for a two-year master’s. Studies show that 71% of nursing master’s students and 74% of nursing doctoral students rely on student loans, and nurses with doctorates earn negligibly or no more than nurses with master’s degrees.

Kim Q. Dau, who ran UCSF’s nurse-midwifery program for a decade, resigned in June because she was uncomfortable with the elimination of the master’s in favor of a doctoral requirement, she said, which is at odds with the state’s workforce needs and unnecessary for clinical practice.

“They’ll be equally prepared clinically but at more expense to the student and with a greater time investment,” she said.

Nurse-midwives are registered nurses with graduate degrees in nurse-midwifery. Licensed in all 50 states, they work mostly in hospitals and can perform abortions and prescribe medications, though they are also trained in managing labor pain with showers, massage, and other natural means. Certified midwives, by contrast, study midwifery at the graduate level outside of nursing schools and are licensed only in some states. Certified professional midwives attend births outside of hospitals.

The California Nurse-Midwives Association also criticized UCSF’s program change, which comes amid a national maternal mortality crisis, a serious shortage of obstetric providers, and a growing reliance on midwives. According to the 2022 “White House Blueprint for Addressing the Maternal Health Crisis” report, the U.S. has the highest maternal mortality rate of any developed nation and needs thousands more midwives and other women’s health providers to bridge the swelling gap.

Ginger Breedlove, founder and CEO of Grow Midwives, a national consulting firm, likened UCSF’s switch from master’s to doctoral training to “an earthquake.”

“Why are we delaying the entry of essential-care providers by making them go to an additional year of school, which adds nothing to their clinical preparedness or safety to serve the community?” asked Breedlove, a past president of the American College of Nurse-Midwives. “Why they have chosen this during one of the worst workforce shortages combined with the worst maternal health crisis we have had in 50 years is beyond my imagination.”

A 2020 report published in Nursing Outlook failed to find that advanced-practice registered nurses with doctorates were more clinically proficient than those with master’s degrees. “Unfortunately, to date, the data are sparse,” it concluded.

The American College of Nurse-Midwives also denounced the doctoral requirement, as have trade associations for neonatal nurse practitioners and neonatal nurses, citing “the lack of scientific evidence that … doctoral-level education is beneficial to patients, practitioners, or society.”

There is no evidence that doctoral-level nurse-midwives will provide better care, Breedlove said.

“This is profit over purpose,” she added.

Bole disputed Breedlove’s accusation of a profit motive. Asked for reasons for the change, she offered broad statements: “The decision to upgrade our program was made to ensure that our graduates are prepared for the challenges they will face in the evolving health care landscape.”

Like Breedlove, Liz Donnelly, vice chair of the health policy committee for the California Nurse-Midwives Association, worries that UCSF’s switch to a doctoral degree will exacerbate the twin crises of maternal mortality and a shrinking obstetrics workforce across California and the nation.

On average, 10 to 12 nurse-midwives graduated from the UCSF master’s program each year over the past decade, Bole said. California’s remaining master’s program in nurse-midwifery is at California State University in Fullerton, south of Los Angeles, and it graduated eight nurse-midwives last year and 11 this year.

More than half of rural counties in the U.S. lacked obstetric care in 2018, according to a Government Accountability Office report.

In some parts of California, expectant mothers must drive two hours for care, said Bethany Sasaki, who runs Midtown Nurse Midwives, a Sacramento birth center. It has had to stop accepting new clients because it cannot find midwives.

Donnelly predicted the closure of UCSF’s midwifery program will significantly reduce the number of nurse-midwives entering the workforce and will inhibit people with fewer resources from attending the program. “Specifically, I think it’s going to reduce folks of color, people from rural communities, people from poor communities,” she said.

UCSF’s change will also likely undercut efforts to train providers from diverse backgrounds.

Natasha, a 37-year-old Afro-Puerto Rican mother of two, has spent a decade preparing to train as a nurse-midwife so she could help women like herself through pregnancy and childbirth. She asked to be identified only by her first name out of fear of reducing her chances of graduate school admission.

The UCSF program’s pause, plus the added time and expense to get a doctoral degree, has muddied her career path.

“The master’s was just the perfect program,” said Natasha, who lives in the Bay Area and cannot travel to the other end of the state to attend CSU-Fullerton. “I’m frustrated, and I feel deflated. I now have to find another career path.”

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 rapidly evolving field of street medicine — the practice of providing health care to homeless people living outside — is getting a jolt in California with a new player: a medical group devoted exclusively to homeless people.

And it’s actually making money.

Sachin Jain, who worked on federal Medicaid policy during his tenure in the Obama administration, helped spearhead a Southern California-based street medicine group called Healthcare in Action in 2021 — and makes no bones about wanting to capture new money from the state and federal governments to treat and house homeless people.

“Health-care issues cause homelessness, but they are also exacerbated by homelessness,” Jain told me. “And the dollars in health care are enormous.”

Around the country, Jain and street medicine doctors and nurses — who have long practiced on the fringes of the health-care system with little revenue — are becoming integral players in the Biden administration’s effort to address the consequences of homelessness.

No longer reliant on inconsistent funding and charitable giving, many street medicine operations are taking advantage of billions in Medicaid dollars to provide social services, from helping patients find an apartment to paying their utility bills. Since October, the federal government has also boosted reimbursements for providers caring for homeless people in the field.

“We’re being brought into the insurance world, and we’re eligible for reimbursement now,” said Jim Withers, a longtime street medicine provider in Pittsburgh who helped start the movement. “We’re legit!”

But Withers is wary of the moneymaking endeavors popping up to treat homeless people.

“I do worry about the corporatization of street medicine and capitalism invading what we’ve been building,” he said. “Caring for people under bridges and on the streets does not always align with the economics of our health-care system. The spirit of the street medicine movement has been one of social justice, but nobody owns the streets.”

California is an ideal laboratory for this new world of Medicaid-funded social services. It is home to more people living on streets and sidewalks, in vehicles, or along waterways than any other state. It is also home to more street medicine providers than anywhere else: 64 of the roughly 150 street medicine organizations across the country are here.

Healthcare in Action employs doctors, nurses and social workers who deliver a range of medical services, including basic wound care, medication administration and antipsychotic injections.

Its street medicine teams operate in 17 California communities and revenue are soaring, reaching $15.4 million in 2023, up from $2 million in 2021. It makes money from Medicaid and charitable contributions, among other sources. It also contracts with hospitals, health insurance companies and municipalities to provide services.

Jain says Healthcare in Action addresses sickness on the streets and saves the health system money by keeping homeless people with costly conditions out of hospitals and jails.

His street medicine teams also work to get people food, addiction treatment and, in some cases, housing.

But much of the teams’ time and energy is dedicated to building trust. It can take time to persuade people to agree to medical care, or housing, for that matter.

“One of the challenges in health care is we dehumanize people who experience homelessness,” Jain said. “We see them as not as worthy of the courtesies that the rest of us have.”

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SAN FRANCISCO — For years, Latinos represented the biggest share of new HIV cases in this city, but testing data suggests the tide may be turning.

The number of Latinos newly testing positive for HIV dropped 46% from 2022 to 2023, according to a preliminary report released in July by the San Francisco Department of Public Health.

The decrease could mark the first time in five years that Latinos haven’t accounted for the largest number of new cases, leading to cautious optimism that the millions of dollars the city has spent to remedy the troubling disparity is working. But outreach workers and health care providers say that work still needs to be done to prevent, and to test, for HIV, especially among new immigrants.

“I am very hopeful, but that doesn’t mean that we’re going to let up in any way on our efforts,” said Stephanie Cohen, who oversees the city’s HIV program.

Public health experts said the city’s latest report could be encouraging, but that more data is needed to know whether San Francisco has addressed inequities in its HIV services. For instance, it’s still unclear how many Latinos were tested or if the number of Latinos exposed to the virus had also fallen — key health metrics the public health department declined to provide to KFF Health News. Testing rates are also below pre-pandemic levels, according to the city.

“If there are fewer Latinos being reached by testing efforts despite a need, that points to a serious challenge to addressing HIV,” said Lindsey Dawson, the associate director of HIV Policy and director of LGBTQ Health Policy at KFF, a health information nonprofit that includes KFF Health News.

San Francisco, like the rest of the country, suffers major disparities in diagnosis rates for Latinos and people of color. Outreach workers say that recent immigrants are more vulnerable to infectious diseases because they don’t know where to get tested or have a hard time navigating the health care system.

In 2022, Latinos represented 44% of new HIV cases in San Francisco, even though they accounted for only 15% of the population. Latinos’ share of new cases fell to 30% last year, while whites accounted for the largest share of new cases at 36%, according to the new report.

Cohen acknowledged a one-year decline is not enough to draw a trend, but she said targeted funding to community-based organizations may have helped lower HIV cases among Latinos. A final report is expected in the fall.

Most cities primarily depend on federal dollars to pay for HIV services, but San Francisco has an ambitious target to be the first U.S. city to eliminate HIV, and roughly half of its $44 million HIV/AIDS budget last year came from city coffers. By comparison, New Orleans, which has similar HIV rates, kicked in only $22,000 of its $13 million overall HIV/AIDS budget, according to that city’s health department.

As part of an effort to address HIV disparities among LGBTQ+ communities and people of color, San Francisco last year gave $2.1 million to three nonprofits — Instituto Familiar de la Raza, Mission Neighborhood Health Center, and San Francisco AIDS Foundation — to bolster outreach, testing, and treatment among Latinos, according to the city’s 2023 budget.

At Instituto Familiar de la Raza, which administers the contract, the funding has helped pay for HIV testing, prevention, treatment, outreach events, counseling, and immigration legal services, said Claudia Cabrera-Lara, director of the HIV program at Sí a la Vida. But ongoing funding isn’t guaranteed.

“We live with the anxiety of not knowing what is going to happen,” she said.

The public health department has commissioned a $150,000 project with Instituto Familiar de la Raza to determine how Latinos are contracting HIV, who is most at risk, and what health gaps remain. The results are expected in September.

“It could help us shape, pivot, and grow our programs in a way that makes them as effective as possible,” Cohen said.

The center of the HIV epidemic in the mid-1980s, San Francisco set a national model for response to the disease after building a network of HIV services for residents to get free or low-cost HIV testing, as well as treatment, regardless of health insurance or immigration status.

Although city testing data showed that new cases among Latinos declined last year, outreach workers are seeing the opposite. They say they are encountering more Latinos diagnosed with HIV while they struggle to get out information about testing and prevention — such as taking preventive medications like PrEP — especially among the young and gay immigrant communities.

San Francisco’s 2022 epidemiological data shows that 95 of the 213 people diagnosed at an advanced stage of the virus were foreign-born. And the diagnosis rate among Latino men was four times as high as the rate for white men, and 1.2 times that of Black men.

“It’s a tragedy,” said Carina Marquez, associate professor of medicine in the Division of HIV, Infectious Diseases, and Global Medicine at Zuckerberg San Francisco General Hospital, the city’s largest provider of HIV care. “We have such great tools to prevent HIV and to treat HIV, but we are seeing this big disparity.”

Because Latinos are the ethnicity least likely to receive care in San Francisco, outreach workers want the city to increase funding to continue to reduce HIV disparities.

The San Francisco AIDS Foundation, for instance, would like more bilingual sexual health outreach workers; it currently has four, to cover areas where Latinos have recently settled, said Jorge Zepeda, its director of Latine Health Services.

At Mission Neighborhood Health Center, which runs Clinica Esperanza, one of the largest providers of HIV care to Latinos and immigrants, the number of patients seeking treatment has jumped from about two a month to around 16 a month.

Among the challenges is getting patients connected to mental health and substance abuse bilingual services crucial to retaining them in HIV care, said Luis Carlos Ruiz Perez, the clinic’s HIV medical case manager. The clinic wants to advertise its testing and treatment services more but lacks the money.

“A lot of people don’t know what resources are available. Period,” said Liz Oates, a health systems navigator from Glide Foundation, who works on HIV prevention and testing. “So where do you start when nobody’s engaging you?”

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

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

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Jamie Holmes says a surgery center tried to make her pay for two operations after she underwent only one. She refused to buckle, even after a collection agency sued her last winter.

Holmes, who lives in northwestern Washington state, had surgery in 2019 to have her fallopian tubes tied, a permanent birth-control procedure that her insurance company agreed ahead of time to cover.

During the operation, while Holmes was under anesthesia, the surgeon noticed early signs of endometriosis, a common condition in which fibrous scar tissue grows around the uterus, Holmes said. She said the surgeon later told her he spent about 15 minutes cauterizing the troublesome tissue as a precaution. She recalls him saying he finished the whole operation within the 60 minutes that had been allotted for the tubal ligation procedure alone.

She said the doctor assured her the extra treatment for endometriosis would cost her little, if anything.

Then the bill came.

The Patient: Jamie Holmes, 38, of Lynden, Washington, who was insured by Premera Blue Cross at the time.

Medical Services: A tubal ligation operation, plus treatment of endometriosis found during the surgery.

Service Provider: Pacific Rim Outpatient Surgery Center of Bellingham, Washington, which has since been purchased, closed, and reopened under a new name.

Total Bill: $9,620. Insurance paid $1,262 to the in-network center. After adjusting for prices allowed under the insurer’s contract, the center billed Holmes $2,605. A collection agency later acquired the debt and sued her for $3,792.19, including interest and fees.

What Gives: The surgery center, which provided the facility and support staff for her operation, sent a bill suggesting that Holmes underwent two separate operations, one to have her tubes tied and one to treat endometriosis. It charged $4,810 for each.

Holmes said there were no such problems with the separate bills from the surgeon and anesthesiologist, which the insurer paid.

Holmes figured someone in the center’s billing department mistakenly thought she’d been on the operating table twice. She said she tried to explain it to the staff, to no avail.

She said it was as if she ordered a meal at a fast-food restaurant, was given extra fries, and then was charged for two whole meals. “I didn’t get the extra burger and drink and a toy,” she joked.

Her insurer, Premera Blue Cross, declined to pay for two operations, she said. The surgery center billed Holmes for much of the difference. She refused to pay.

Holmes said she understands the surgery center could have incurred additional costs for the approximately 15 minutes the surgeon spent cauterizing the spots of endometriosis. About $500 would have seemed like a fair charge to her. “I’m not opposed to paying for that,” she said. “I am opposed to paying for a whole bunch of things I didn’t receive.”

The physician-owned surgery center was later purchased and closed by PeaceHealth, a regional health system. But the debt was turned over to a collection agency, SB&C, which filed suit against Holmes in December 2023, seeking $3,792.19, including interest and fees.

The collection agency asked a judge to grant summary judgment, which could have allowed the company to garnish wages from Holmes’ job as a graphic artist and marketing specialist for real estate agents.

Holmes said she filed a written response, then showed up on Zoom and at the courthouse for two hearings, during which she explained her side, without bringing a lawyer. The judge ruled in February that the collection agency was not entitled to summary judgment, because the facts of the case were in dispute.

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Representatives of the collection agency and the defunct surgery center declined to comment for this article.

Sabrina Corlette, co-director of Georgetown University’s Center on Health Insurance Reforms, said it was absurd for the surgery center to bill for two operations and then refuse to back down when the situation was explained. “It’s like a Kafka novel,” she said.

Corlette said surgery center staffers should be accustomed to such scenarios. “It is quite common, I would think, for a surgeon to look inside somebody and say, ‘Oh, there’s this other thing going on. I’m going to deal with it while I’ve got the patient on the operating table.’”

It wouldn’t have made medical or financial sense for the surgeon to make Holmes undergo a separate operation for the secondary issue, she said.

Corlette said that if the surgery center was still in business, she would advise the patient to file a complaint with state regulators.

The Resolution: So far, the collection agency has not pressed ahead with its lawsuit by seeking a trial after the judge’s ruling. Holmes said that if the agency continues to sue her over the debt, she might hire a lawyer and sue them back, seeking damages and attorney fees.

She could have arranged to pay off the amount in installments. But she’s standing on principle, she said.

“I just got stonewalled so badly. They treated me like an idiot,” she said. “If they’re going to be petty to me, I’m willing to be petty right back.”

The Takeaway: Don’t be afraid to fight a bogus medical bill, even if the dispute goes to court.

Debt collectors often seek summary judgment, which allows them to garnish wages or take other measures to seize money without going to the trouble of proving in a trial that they are entitled to payments. If the consumers being sued don’t show up to tell their side in court hearings, judges often grant summary judgment to the debt collectors.

However, if the facts of a case are in dispute — for example, because the defendant shows up and argues she owes for just one surgery, not two — the judge may deny summary judgment and send the case to trial. That forces the debt collector to choose: spend more time and money pursuing the debt or drop it.

“You know what? It pays to be stubborn in situations like this,” said Berneta Haynes, a senior attorney for the National Consumer Law Center who reviewed Holmes’ bill for KFF Health News.

Many people don’t go to such hearings, sometimes because they didn’t get enough notice, don’t read English, or don’t have time, she said.

“I think a lot of folks just cave” after they’re sued, Haynes said.

Emily Siner reported the audio story.

After six years, we’ll have a final installment with NPR of our Bill of the Month project in the fall. But Bill of the Month will continue at KFF Health News and elsewhere. We still want to hear about your confusing or outrageous medical bills. Visit Bill of the Month to share your story.

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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STILLWATER, Minn. — Vice President Kamala Harris’ selection of Minnesota Gov. Tim Walz as her running mate is making health care a front-burner issue in the final sprint to the November presidential election.

Walz, a 60-year-old former high school teacher and football coach, has a record of supporting left-leaning health care initiatives during his two terms as governor and while serving in the U.S. House of Representatives from 2007 to 2019. He also leads a state central to the health care industry: Minnesota is home both to the nation’s largest health insurer, UnitedHealth Group, and one of its most prestigious hospital systems, the Mayo Clinic.

Republicans have seized on his record to portray the Harris-Walz ticket as extreme on health care, while Democrats say Walz’s efforts to lower drug costs and preserve abortion access are mainstream positions that appeal to swing voters. Either way, his selection thrusts health care center stage as an election issue, underscoring the primacy of the nation’s battle over abortion access as well as voters’ deep angst over spiraling health care costs.

Many of Walz’s stances dovetail with those of Harris.

He has fought for abortion access, signing legislation to codify abortion rights in the state, and in March toured a Planned Parenthood clinic with the vice president.

He supported congressional legislation empowering the federal government to negotiate drug prices in Medicare, a health insurance program for seniors and the disabled. The Biden administration on Aug. 15 released new, reduced prices for 10 drugs in the program that stem from the negotiations between the government and drugmakers. The lower costs will kick in in 2026.

As governor, Walz signed legislation in 2020 to cap out-of-pocket insulin costs to $35 a month for eligible residents with an urgent need for the medication. Two years later, President Joe Biden did the same for all Medicare patients.

Early in the covid-19 pandemic, Walz mandated that masks be worn in most indoor public spaces. He extended an executive stay-at-home order in 2020, which led former President Donald Trump to post “LIBERATE MINNESOTA!” on X, the social platform then called Twitter.

“He has common sense when it comes to issues and policy,” said Andy Slavitt, a former UnitedHealth executive and former administrator of the Centers for Medicare & Medicaid Services. “He’s not an ideologue. He’s an independent thinker who cares about people who don’t have resources,” said Slavitt, who served as a senior adviser to the Biden administration’s covid response team.

Walz also has championed fertility treatments, sharing his personal story of how he and his wife, Gwen, relied on them to conceive. Because in vitro fertilization is under increasing threat by some abortion opponents, despite its broad popularity, his firsthand knowledge of fertility challenges is adding political muscle.

“Walz has been articulate and passionate about his experience with IVF, and that connects with people on both sides of the aisle,” said Christoper Sheeron, founder and president of Action for Health, a national nonprofit advocacy organization.

Republicans in Minnesota say Walz’s health care positions will work against the Democratic ticket. They criticize his 2021 covid vaccination or regular testing requirement for state employees, his support of legislation codifying abortion rights, his backing of recreational marijuana legalization, and a bill he signed to expand public health coverage to some immigrants lacking legal residency.

“Under Gov. Walz, we saw one of the most radical, far-left agendas in the country. While Americans are searching for unity, Walz has a record of implementing extreme policies that only divide us further,” the Republican leader of Minnesota’s state Senate, Mark Johnson, said in a statement. “He has put our state on a path to government-run health care and championed restrictive health care mandates that limit Minnesotans’ access to life-saving care.”

Minnesotan Tracy Mitchell said that before Walz’s selection she was leaning toward backing former President Donald Trump in November because she believed he would do more to lower her health care costs.

The announcement cemented her decision: She’s voting for Trump.

“I have three kids, and health care gets expensive,” Mitchell, 38, of Ham Lake, said while visiting Stillwater, Minnesota, with her family. She is the director of program operations for a mental health care clinic.

“The way he handled covid, and in terms of health care, I think he is too extreme,” she said.

Still, Democrats express hope that a greater focus on health care will give them an advantage in the election, tapping into voter concerns about pocketbook issues in swing states.

Forty-eight percent of Republicans or adults who lean Republican said health care affordability is a very big problem in the country, according to a May poll by the Pew Research Center. Sixty-five percent of Democrats or adults who lean Democratic agreed.

The concern tops illegal immigration, the federal budget deficit, gun violence, and drug addiction.

Three in 4 adults said they are very or somewhat worried about being able to afford unexpected medical bills, based on a poll done in January and February by KFF, a health information nonprofit that includes KFF Health News.

“Republicans have always suffered because they talk about health care in economic terms,” said William Pierce, who is a senior director at APCO Worldwide, a global advisory and advocacy firm, and a former GOP congressional aide. “Democrats talk about it as a personal issue. The selection of Walz gives them a greater opportunity to push it harder.”

Walz’s counterpart on the GOP ticket, Ohio Sen. JD Vance, has less experience with health care issues. But he has sought to show concern about rising costs and barriers to care.

During a recent visit in Eau Claire, Wisconsin, Vance said the government must do more to preserve health care access in rural America.

In a July 2017 op-ed published by The New York Times, well before he ran for the Senate as a Republican, Vance expressed support for some provisions of the Affordable Care Act and criticized the GOP push to repeal the law because, he said, the proposal “withdraws its supports for the poor.”

Since joining Trump’s ticket, Vance has aligned his views with Trump’s on the ACA — a law Trump tried and failed to repeal while president.

“The difference is between those defending the ACA and those who would repeal it; the choice of Walz makes that contrast as clear as ever,” said Anthony Wright, the executive director of Families USA, a nonpartisan organization focused on health care access and affordability.

Vance has backed letting the federal government negotiate Medicare drug prices — a rare point of agreement on health policy with Democrats.

Like Trump, he opposes gender-affirming care for transgender minors. But he has taken firmer positions than the former president on abortion — a vulnerability Democrats have sought to exploit. Public support of abortion rights has increased since the Supreme Court struck down Roe v. Wade in 2022 and many Republican-led states moved to impose strict bans.

Both the Democratic and Republican campaigns are drawing fresh scrutiny of their positions on health care. California Lt. Gov. Eleni Kounalakis’ super PAC, Californians for Choice, released an ad this month saying Vance supports a nationwide abortion ban, “stripping away our freedom.”

Like Trump, Vance has recently said states should decide specific abortion policies, but he previously supported outlawing abortion nationwide.

Trump’s campaign, meanwhile, has labeled Walz “Tampon Tim” because of a state law he signed requiring menstrual products to be available to “all menstruating students in restrooms regularly used by students in grades 4 to 12, according to a plan developed by the school district.”

A recent Trump campaign ad called Walz “too weird. Too radical.”

But Walz’s addition to the ticket has energized Democratic voters with health care concerns such as Angel Palm, 32, a life coach for people with disabilities who lives in Fridley, Minnesota.

“My son is autistic and has medical costs. It’s so important,” she told KFF Health News. “I’m so stoked.”

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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ATLANTA — At the shuttered Atlanta Medical Center, a “Stronger Together” mural sends a hopeful message near a summer spray of hydrangeas. The campus was mostly quiet on a recent weekend, since AMC closed almost two years ago. A lone security vehicle sat behind a chain-link fence, and pedestrians passed by without even a glance.

In the town of Cuthbert, some 160 miles away, the Southwest Georgia Regional Medical Center also remains shut after closing four years ago, another Southern hospital casualty in a region dotted with them. Even a smaller facility replacing the former Cuthbert hospital “would be tremendous for the county,” said Steve Whatley, chair of the Randolph County Hospital Authority.

The two hospitals — one inner-city, the other rural — faced some of the same financial pressures, including not having enough patients with private insurance.

This year, they also shared the attention of some of Georgia’s most powerful lawmakers. Legislation signed in April by Gov. Brian Kemp, a Republican, included a provision pushed by U.S. Sen. Jon Ossoff, a Democrat.

The law amends the state’s “certificate of need” system, which allows existing hospitals and other health facilities to block would-be competitors’ plans to expand by arguing there’s insufficient need for their services.

Certificate of need laws exist in 35 states and Washington D.C., according to the National Conference of State Legislatures. The hospital industry, especially nonprofit facilities, generally support the rules, and have argued they reduce health care costs and preserve access to quality medical services. Under CON requirements, health providers must obtain approval from the state before offering some new services or before building or expanding facilities.

Whether the laws improve care or reduce costs is questionable, researchers have found, and critics say more competition would decrease spending by insurers and consumers. In 2018, the Trump administration issued a report recommending that states repeal or revise their certificate of need requirements, arguing they increase health care costs.

“The evidence is pretty darn overwhelming that CON laws don’t achieve the initially stated goals of increasing access, lowering costs, and improving quality,” said Matthew Mitchell, a senior research fellow at West Virginia University.

Dan Sullivan, a Georgia-based consultant who often helps hospitals and other medical providers in their effort to preserve the laws, said that by limiting the number of providers offering very specialized health services, such as organ transplants, states can better maintain high quality of care.

Certificate of need laws can reduce fraud, Sullivan said. Florida repealed its certificate of need requirements for hospitals and many other health providers following the Trump administration’s recommendation. Fraud accelerated in the state after regulations were phased out, he said.

“At least when you file a CON, there’s at least a minimum of investigation,” Sullivan said.

He argued another benefit of the laws is that they frequently mandate a baseline level of charity care.

Other Southern states recently peeled back their certificate of need laws. Tennessee’s legislature passed a bill this year exempting more medical providers from needing to apply for a certificate. North Carolina rolled back some restrictions in an overhaul that paved the way for Medicaid expansion last year. South Carolina made a significant change to its rules last year.

This year, Republicans in Georgia’s legislature attempted to repeal the state’s certificate of need rules. The effort fell short in the face of fervent hospital opposition.

The narrower legislation that Kemp signed would instead ease the rules for building rural hospitals and exempts a potential new hospital that would partner with Morehouse School of Medicine, one of the country’s few historically Black medical schools.

That could potentially fill much of the gap left by Atlanta Medical Center’s closing.

Hospital industry officials said Morehouse would probably need a well-heeled partner, and Atrium Health, part of Charlotte, North Carolina-based Advocate Health, may be a logical match. The growth-oriented nonprofit health system has partnered with Morehouse Healthcare to run a clinic in East Point, south of Atlanta, and has a growing presence in the state. Both Morehouse and Atrium declined to discuss a potential hospital partnership with KFF Health News.

The shuttered AMC main campus, meanwhile, is ensnared in a moratorium the city imposed on redeveloping the site — a response to the jolting decision by its owner, Wellstar Health System, to close the hospital.

In 2022, Mayor Andre Dickens issued an executive order temporarily halting any new development on the site. He has criticized the “unusually abrupt closure of one of Atlanta’s most important medical centers.”

Atlanta’s city council extended the ban another 120 days in June.

A new inner-city hospital “would be a heavy lift financially,” said Josh Berlin, CEO of rule of three, an Atlanta-based health care consulting firm. That’s because it would draw largely from the area’s high level of uninsured and Medicaid patients. Georgia is one of 10 states that have not fully expanded Medicaid, and thus has a high rate of uninsured patients.

“You’ve got a community that is struggling to find care in the wake of the Atlanta Medical Center closure,” he said.

Grady Memorial Hospital and other Atlanta facilities have seen a bump in patient volume since the closure of AMC. Grady is regularly deemed “dangerously overcrowded” in one state dashboard.

The need to handle additional patients has sped up expansion plans for Grady, including adding more than 150 beds, said its chief strategy officer, Shannon Sale. “We knew that was going to be needed over time. The Atlanta Medical Center closure sped up that process,” she said.

In southwestern Georgia, plans are more modest.

Community leaders, including Whatley, are awaiting the results of a feasibility study that is expected to propose a downsized “rural emergency hospital,” a new federal designation that directs extra funding to eligible facilities.

The program guarantees hospitals in rural communities extra Medicare payments and an additional payment of about $3.2 million a year if they close costly inpatient services and offer only emergency and outpatient care.

Ossoff won almost $12 million in three different appropriations bills to support a rural emergency hospital in Cuthbert. He said he met with state leaders to secure the provision in the Georgia certificate of need bill that would allow it to reopen. Southwest Georgia Regional Medical Center would also have to get an exemption from federal officials to qualify for a rural emergency hospital because of its closing date.

“This is a very challenging thing to do, and we’ve still got significant hurdles to clear,” Ossoff told KFF Health News.

Even if it reopens, the Cuthbert facility will face the same pressures that led to its shuttering in the first place — what Ossoff called “failures of state policy.” At the time, he cited Georgia’s decision not to fully expand Medicaid in the wake of the closure.

Brenda Clark, who works in a wellness center across the street from the closed Cuthbert hospital, said some locals are skeptical about the facility reopening.

“It’s much needed. People are hoping and praying we get it back,” she said. But “there are some people who say, ‘We’ll believe it when we see it.’”

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JACKSON, Ga. — Ed Whitehouse stood alongside a state highway in rural Butts County, Georgia, and surveyed acres of rolling fields and forests near Interstate 75. Instead of farmland and trees, he envisioned a hospital.

Whitehouse, a consultant for a local health care company that wants to build a hospital there with at least 150 beds, said the group could break ground within a year. The idea, he said, is to provide medical services beyond those currently provided by Wellstar Sylvan Grove Medical Center, an aging, nonprofit “critical access” hospital that offers limited services, including emergency care, rehabilitation, wound care, and imaging.

But it took a new law, pushed by the state’s powerful Republican lieutenant governor, Burt Jones, to clear the way for construction. The land is partly owned by his father, Bill Jones, a successful businessman whose interest in developing a hospital in his home county drew attention from state Democrats and the hospital industry.

The situation has been portrayed as “this billionaire entrepreneur, Bill Jones, exploiting the legal system through his son, imposing his will on people and trying to cash in,” Whitehouse said. “Nothing could be further from the truth.”

Woven through the drama in Butts County are arcane but consequential rules that require state approval for hospital construction and expansion. The rules, used nearly nationwide until the 1980s, require potential builders to apply for permission for new projects. State officials evaluate need based on criteria such as population growth and existing hospital capacity.

This year, Georgia lawmakers joined several other states in targeting those “certificate of need,” or CON, regulations for dramatic change. Some states have exempted certain medical providers from the process; others have been more dramatic, including South Carolina, which is sunsetting most of its rules.

Attempts to pave the way for a new hospital in Butts County show how debate over certificate of need laws can intensify as legislatures try to reconcile the often conflicting priorities of politicians, the health care industry, and communities.

The laws have been criticized for limiting competition, and some health care analysts, like Matthew Mitchell, a senior research fellow at West Virginia University, feel everyday people may get the short end of the stick.

“This kind of a regulation is often there because powerful businesses want them,” Mitchell said, “not because they protect consumers.”

Bill Jones, a 79-year-old former state legislator, supported a 2022 legislative push to open a new hospital in Butts County. But the effort ran into formidable opposition from Wellstar Health System, which operates Sylvan Grove and 10 other hospitals in Georgia.

“As a nonprofit health system, we are always exploring partnerships that expand our mission of enhancing wellbeing in the communities we serve,” said Matthew O’Connor, a Wellstar spokesperson. “Our analysis indicates that another hospital in this area is not needed at this time.”

This year, Georgia Democrats thought they could leverage Republicans’ interest in loosening the rules to gain support for Medicaid expansion. But Democrats were outnumbered in the legislature, and lawmakers eased several rules without that trade-off.

For example, certain hospital projects in rural counties are now exempt. Jones’ project and his home county look likely to benefit.

Burt Jones, Georgia’s lieutenant governor, who is being investigated for his role as a fake elector for Donald Trump in the 2020 presidential election, maintains his push for changes to the rules isn’t about helping his father.

“It will give people access to health care in a reasonable travel time and convenience for them as well,” Burt Jones said.

Bill Jones has used Butts County as the home base to build his business network, which includes petroleum distribution, retail convenience stores, and fast-food restaurants. In a recent interview, he complained about media coverage of his son’s legislative connection to the hospital project.

He said his interest in opening another local hospital is about community need and, at least in part, stems from his personal experience. His wife gets medical services at Emory Healthcare, more than 40 miles away in Atlanta.

“You’re not going to get the attention you need medically” at the 25-bed Sylvan Grove hospital in Jackson, he said. “Health care ought not to be about politics.”

But the lieutenant governor had to be somewhat aware that legislation he was pushing could be seen as financially benefiting a close family member, said Josh McLaurin, a Democratic state senator whose district runs from Atlanta into its northern suburbs. Fellow members of the Democratic Party were encouraged to support the certificate of need bill, even though the GOP has a majority in the Georgia Legislature, he said.

“If they want Democrats on board on a bill they could probably pass without our votes, that tends to suggest that there’s a concern about the narrative,” McLaurin said.

Hospital industry lobbyists, aware of the Jones-Butts County connection, watched the debate with fear of wholesale repeal of the certificate of need laws, which ultimately didn’t happen.

The final bill doesn’t name Butts County specifically. But it does exempt “a new general acute care hospital in a rural county” from having to obtain a certificate of need. With a population of about 27,000, Butts County meets the definition of “rural” outlined in Georgia law.

Now, the small local company for which Whitehouse works — Interstate Health Systems, which is partly owned by Bill Jones — is moving forward. Land is being cleared for medical office buildings, potentially to lure providers to the area.

Whitehouse said major hospital systems already operating in Georgia are interested in partnering on construction and operation of a new facility.

Members of the Butts County Hospital Authority, which oversees Sylvan Grove, declined to comment. But last year, county commissioners passed a resolution encouraging the hospital authority to pursue a new facility.

Byrd Garland, a retired attorney and former hospital authority member, said he’d appreciate any project that gives people local access to health care, “so they don’t have to drive an hour or two hours to get to it.”

Garland said he’s received both good and bad care at Sylvan Grove, and sometimes would rather make the trek to Atlanta to a better-resourced hospital.

“You get that kind of mindset when you’ve grown up out here in this medical desert that we’re in now,” he 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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KFF Health News’ senior fellow and editor-at-large for public health, Céline Gounder, discussed the World Health Organization’s declaration that the mpox outbreak in Africa is a global health emergency on CBS’ “CBS Mornings” on Aug. 15. On “CBS Mornings” on Aug. 12 Gounder discussed the FDA’s approval of the nasal spray neffy as an EpiPen alternative for severe allergic reactions. On CBS’ “CBS Weekend News” on Aug. 11 she discussed how New York City is preparing for longer mosquito seasons.

• Click here to watch Gounder on “CBS Mornings” on Aug. 15
• Click here to watch Gounder on “CBS Mornings” on Aug. 12
• Click here to watch Gounder on “CBS Weekend News”

KFF Health News Colorado correspondent Rae Ellen Bichell discussed Medicaid unwinding in Colorado on Colorado Public Radio’s “Colorado Matters” on Aug. 14.

• Click here to hear Bichell on “Colorado Matters”
• Read Bichell’s “Colorado Dropped Medicaid Enrollees as Red States Have, Alarming Advocates for the Poor”

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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Trisha Byers left behind one crucial item when she moved to North Carolina last year to be closer to her family after suffering a brain injury: health insurance.

In Massachusetts, Byers, 39, was enrolled in Medicaid, the government health program that covers low-income people. But she was ineligible in North Carolina, which had not yet expanded Medicaid coverage under the Affordable Care Act. She said she racked up thousands of dollars in unpaid emergency room bills while uninsured for several months after her move.

Then in December, North Carolina joined 39 other states and Washington, D.C., in widening Medicaid eligibility to include adults with incomes up to 138% of the federal poverty level, or $20,783 for an individual.

“I could finally get all the doctor appointments I needed,” said Byers, one of more than 500,000 North Carolinians who gained coverage.

The North Carolina expansion came amid the biggest upheaval in Medicaid’s nearly six-decade history. Since April 2023 — when protections that had blocked states from disenrolling Medicaid beneficiaries during the pandemic expired — states have disenrolled more than 24 million people whom they said no longer qualified or had failed to renew coverage.

This Medicaid “unwinding” led to fears that the number of people without insurance would spike. But it also coincided with moves in more than a dozen states to expand health coverage for lower-income people, including children, pregnant women, and the incarcerated.

These expansions will mitigate the effects of the unwinding to some degree, though it’s still unclear how much. Five states have not finished culling their rolls, and the effect on the uninsured rate won’t be clear until the U.S. Census Bureau releases official figures in September of next year.

“The pandemic was destructive and concerning and clearly demonstrated that Medicaid is so crucially important for our national safety net,” said Jennifer Babcock, senior vice president for Medicaid policy at the Association for Community Affiliated Plans, a trade group representing nonprofit health insurers that cover people on Medicaid. “These expansions are incredibly meaningful.”

Unwinding-era expansions include:

• South Dakota, like North Carolina, expanded Medicaid coverage under the Affordable Care Act last year. About 22,000 people enrolled in the first eight months.
• In July, Oregon launched a Medicaid-like coverage option for those who earn too much to qualify for Medicaid under federal limits. The plan is available to all adults with incomes between 138% and 200% — up to $30,120 for an individual — of the federal poverty level. More than 50,000 people have enrolled so far, Oregon officials say.
• In January, a new federal law required states to allow children to stay covered under Medicaid for at least a year after signing up. Several states are going beyond that: Oregon, New Mexico, and Washington, for example, allow children to stay covered up to age 6. California passed legislation to expand continuous eligibility for children up to age 4 but has not yet implemented the policy.
• Three states widened income eligibility for children to qualify for Medicaid: Arizona, Maine, and North Dakota.
• This year, Utah began offering a Medicaid-like coverage option for children regardless of immigration status, though the program is capped at about 2,000 children.
• Several states expanded coverage for pregnant women. Nevada, North Dakota, and Tennessee widened income eligibility to make it easier for pregnant women to qualify for Medicaid. Alabama and Maryland expanded eligibility to cover those who are pregnant regardless of immigration status. And Maine, Oregon, and Vermont extended postpartum coverage to 12 months, up from two. With those changes, 47 states now offer one year of postpartum coverage.
• In June, five states — Illinois, Kentucky, Oregon, Utah, and Vermont — received approval from the Biden administration to extend Medicaid coverage to incarcerated people up to 90 days before their release. Those states will join several states, including California, Massachusetts, Montana, and Washington, in offering that coverage.

States, which split funding of Medicaid with the federal government, typically expand Medicaid eligibility during times of economic growth when they have more revenue. But several other factors have contributed to the expansion trend. These include heightened awareness over rising maternal mortality rates and new restrictions on abortion, which have reinforced the need for expansions for pregnant women, said Allison Orris, a senior fellow with the left-leaning Center on Budget and Policy Priorities.

In particular, the pandemic showed how important health coverage is to ensure people’s health and communities’ safety from infectious diseases, Orris said. “It is not surprising to see states look at their Medicaid programs and find ways to strengthen in the midst of the unwinding,” she said.

For example, while federal Medicaid funding cannot be used for people living in the country unlawfully, a small but growing number of states have used their money to expand coverage to residents lacking legal status.

During the pandemic, as a requirement to gain extra federal funding, states were prohibited from cutting off Medicaid coverage even for those no longer eligible. The experience showed states the benefits of keeping people enrolled, rather than churning them in and out as their income fluctuates, Orris said. It also brought the nation’s uninsured rate to a record-low 7.7%.

Some advocates fear the unwinding of that pandemic-era policy will reverse key gains. A KFF survey published in April found 23% of adults reported being uninsured after they were disenrolled from Medicaid in 2023. A Centers for Disease Control and Prevention report released Aug. 6 found the uninsured rate rose to 8.2% in the first quarter of 2024, from 7.7% in the same quarter in 2023.

Enrollment increased by about 23 million people during the pandemic. As of Aug. 1, with about 85% of the unwinding completed, roughly 14.8 million people have been removed from Medicaid rolls. As a result, it’s unlikely the uninsured rate will rise as sharply as some advocates feared a year ago, said Jennifer Tolbert, deputy director of the Program on Medicaid and the Uninsured at KFF, a health information nonprofit that includes KFF Health News.

“We have seen some amazing coverage expansion in places like Oregon and California,” said Ben Anderson, deputy senior director of health policy at Families USA, a consumer advocacy group. “But if you live in Texas, Florida, and Georgia, since the pandemic your health coverage has been disrupted in ways that were preventable by state leaders.” Those three states are among the 10 that have chosen not to expand Medicaid under the ACA.

Still, Anderson said, the effect of the expansions, even in a limited number of states, will ensure some people can better afford health care and avoid medical debt.

The unwinding process has been rife with fumbling, particularly in states that didn’t steer enough resources to connect people with coverage. A study by the federal Government Accountability Office released in July revealed a Centers for Medicare & Medicaid Services’ finding that almost all states made mistakes that led to eligible individuals losing Medicaid coverage.

The recent Medicaid expansions provide examples of how some states prioritize health coverage, particularly for certain vulnerable groups.

Tricia Brooks, a Medicaid expert at Georgetown University, noted that some states are “targeting little pockets of coverage and doing it for a variety of reasons.”

Getting and keeping children insured means they are more likely to have a regular health provider and be ready to learn in school, she said. “There is no doubt there is a return on investment,” she said.

Medicaid advocates wonder, though, whether a second Trump administration would curtail coverage expansions. Republicans have signaled they do not want to extend the federal subsidies that reduce what lower-income people pay for ACA marketplace plans and that are scheduled to expire in 2025.

“We are bracing for that potential impact,” said Erin Delaney, director of health care policy at the Progressive Policy Institute.

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

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A federal lawsuit in Texas against Planned Parenthood has a web of ties to conservative activist Leonard Leo, whose decades-long effort to steer the U.S. court system to the right overturned Roe v. Wade, yielding the biggest rollback of reproductive health access in half a century.

Brought by an anonymous whistleblower and later joined by Texas Attorney General Ken Paxton, the suit alleges the Planned Parenthood Federation of America and three Planned Parenthood affiliates defrauded the Texas and Louisiana Medicaid programs by collecting $17 million for services provided while it fought state efforts to remove it as an approved provider.

The suit claims violations of the False Claims Act, an obscure but powerful law protecting the government from fraud, and seeks $1.8 billion in penalties from Planned Parenthood, according to a motion that lawyers for the whistleblower filed in federal court in 2023.

The lawsuit builds on efforts over years by the religious right and politicians who oppose abortion to deliver blows to Planned Parenthood — which provides sexual and reproductive health care at nearly 600 sites nationwide — now bolstered by Leo’s work reshaping the American judiciary.

Anti-abortion groups and their allies secured a generational victory in 2022 when the Supreme Court overturned Roe v. Wade, which ended the constitutional right to abortion and paved the way for bans or severe restrictions in 20 states. The court challenge in Texas demonstrates how the forces behind the end of Roe threaten access to other health and family planning services.

The Planned Parenthood clinics being sued do not provide abortions. They are in Texas and Louisiana, which banned nearly all abortions, respectively, in 2021 and 2022.

Leo, an anti-abortion Catholic, is connected to the key players in the Texas lawsuit — the whistleblower plaintiff, an attorney general, and the judge — according to a KFF Health News review of tax records, court documents from multiple lawsuits, statements to lawmakers, and website archives.

Leo provided legal counsel to the anti-abortion group at its center, and he has financial and other connections to Paxton.

They filed the case in federal court in Amarillo, Texas, where Matthew Kacsmaryk is the only judge. He is a longtime member of the Federalist Society, the conservative legal juggernaut for which Leo has worked for over 25 years in various capacities and currently serves as co-chair.

Kacsmaryk’s rulings have curtailed access to reproductive health since the Senate confirmed him in 2019. He suspended the FDA’s approval of mifepristone, a drug used in medication abortion, propelling the issue to the Supreme Court, which ultimately threw out the case. In another case, Kacsmaryk ruled to limit young people’s access to birth control through a federal family planning program.

Leo did not respond to questions for this article and a spokesperson declined to comment. Through a court spokesperson, Kacsmaryk declined to comment for this article.

The anonymous whistleblower in 2021 accused the Planned Parenthood Federation of America and Planned Parenthood affiliates of defrauding the Medicaid programs of Texas and Louisiana. Paxton, who has repeatedly acted to thwart abortion rights and joined the case in 2022, alleges in the lawsuit that clinics received payments they weren’t entitled to from Texas Medicaid from early 2017 to early 2021 as the state was pushing to end Planned Parenthood’s status as a Medicaid provider. Louisiana and the Department of Justice have not joined the complaint.

The lawsuit’s origins go back a decade. The anonymous whistleblower, between 2013 and 2015, “conducted an undercover investigation to determine whether Planned Parenthood’s fetal tissue procurement practices were continuing, and if they were legal and/or ethical,” according to the whistleblower’s complaint filed in 2021.

The explanation mimics how the Center for Medical Progress, a California-based anti-abortion group founded by activist David Daleiden in 2013, has publicly described its work. “The Human Capital project is a 30-month-long investigative journalism study by The Center for Medical Progress, documenting how Planned Parenthood sells the body parts of aborted babies,” the group states on its website.

In a November 2022 court order, Kacsmaryk said the private party initiating the lawsuit is “the president of CMP,” the title Daleiden held at that time, according to a Center for Medical Progress tax filing.

The Center for Medical Progress and Daleiden did not respond to requests for comment.

By law, federal funds can’t pay for abortions unless the pregnancy threatens the life of a woman or is the result of rape or incest, but the program reimburses for other care such as contraception, screenings for sexually transmitted infections, and cancer screenings. Medicaid, which provides health coverage for people with low incomes, is jointly financed by states and the federal government.

According to its 2022-23 annual report, Planned Parenthood affiliate clinics provided 9.13 million health care services to 2.05 million patients nationally in 2022. Testing and treatment for sexually transmitted infections accounted for about half of those services, contraception amounted to a quarter, and abortions constituted 4%.

Planned Parenthood Gulf Coast, which operates clinics in Texas and Louisiana, is among the branches Paxton and the whistleblower are suing. From July 2022 to June 2023, its clinics provided patients more than 86,000 tests for sexually transmitted infections, 44,000 visits for birth control, and nearly 7,000 cancer screening and prevention services, CEO Melaney Linton told KFF Health News.

“All of these services and more are at risk in this politically motivated lawsuit,” Linton said. The lawsuit’s allegations “are false. Planned Parenthood did not commit Medicaid fraud.”

Linton has said the lawsuit’s purpose is clear: “trying to shut Planned Parenthood down.”

Texas terminated Planned Parenthood’s Medicaid participation in March 2021. Until then, affiliates “were entitled to receive reimbursement” for services to Medicaid patients because their provider agreements with Texas’ Medicaid program were valid, attorneys for the Planned Parenthood clinics wrote in a February 2023 court filing in support of their motion for summary judgment.

Louisiana has not removed Planned Parenthood from its Medicaid program.

Leo served as legal counsel to the Center for Medical Progress, according to documents produced as part of a separate lawsuit Planned Parenthood filed in federal court in California against the anti-abortion group. Among those, a July 2018 document lists 25 emails Leo and Daleiden traded in June and July 2015, including in the days before the anti-abortion group released its first video.

Paxton’s ties to Leo can be traced back at least a decade to when the former state senator and rising conservative star was about to begin his first term as attorney general.

In 2014, Leo, then executive vice president of the Federalist Society, was a rare non-Texan named to Paxton’s attorney general transition advisory team. Tax filings show that the Concord Fund, one of several Leo-linked groups that spend money to influence elections and aren’t required to disclose their donors, gave $20.3 million from July 2014 through June 2023 to the Republican Attorneys General Association, the political nonprofit that works to elect Republicans as states’ top law enforcement officers. Known as RAGA, the group funneled more than $1.2 million to Paxton’s campaign over three election cycles from 2014 to 2022, Texas campaign finance records show.

Texas government officials knew the state was reimbursing Planned Parenthood clinics for medical services from 2017 to 2021, which renders the state’s argument that clinics violated the False Claims Act “without merit,” said Jacob Elberg, a professor at Seton Hall Law School and an expert in health care fraud.

The law is intended for situations “where essentially someone submits a claim for payment or keeps money that they’re not entitled to where they have information that the government doesn’t have,” Elberg said. “And they essentially know that if the government knew the truth, the government wouldn’t pay them or would be demanding money back.”

But with Planned Parenthood, “everything involved here happened out in the open,” Elberg said. “They were submitting bills and the government knew what was going on and was paying those bills.”

The plaintiffs’ arguments are a “tortured use” of the False Claims Act, said Sarah Saldaña, a former U.S. attorney for the Northern District of Texas.

“Things like this, which have these obvious political overtones, tend to undermine further the view of the public of the judicial courts system,” Saldaña said.

The office of the attorney general did not respond to requests for comment.

Anti-abortion groups support the Paxton lawsuit even though abortion is essentially outlawed in the Lone Star State. Planned Parenthood “is still a pro-abortion organization,” said John Seago, president of Texas Right to Life. Even though Planned Parenthood provides other care, “all of those services are tainted by their pro-abortion mindset,” he said.

“Planned Parenthood is a danger to Texans. We wish that Planned Parenthood didn’t have a single location within our state,” Seago said. “Whenever the state pays Planned Parenthood to do something, even if it’s a good service, we are building up their brand and giving them more reach into our Texas communities.”

Roughly three dozen Planned Parenthood clinics in Texas continue to provide non-abortion services like birth control and STI screenings. The $1.8 billion the whistleblower is seeking is equivalent to nearly 90% of Planned Parenthood’s annual revenue, according to its most recent annual report.

The Campaign Against Planned Parenthood

The Center for Medical Progress was little known in 2015 when it began releasing videos containing explosive allegations that Planned Parenthood was illegally selling tissue from aborted fetuses, which Planned Parenthood denies.

The group and Daleiden had ties to powerful anti-abortion organizations. They include Live Action, where Daleiden worked before creating the Center for Medical Progress, and Operation Rescue, the Kansas-based group that staged demonstrations against George Tiller’s abortion clinic in that state before a gunman killed the physician in 2009.

“The evidence I am gathering deeply implicates Planned Parenthood affiliates across the country in multiple felonies and can trigger severe legal and financial consequences for PP and their associates, while providing new justifications for state defunding efforts and turning public opinion against Planned Parenthood and abortion,” Daleiden wrote in a May 2013 email produced as part of the litigation Planned Parenthood brought in California. The subject line: “Meeting to Take Down PP.”

Texas tried to remove Planned Parenthood clinics from its Medicaid program following the center’s release of the undercover videos, a move that was part of a larger political firestorm. Roughly a dozen states launched investigations into the reproductive health provider, and Republicans in Congress renewed calls to strip Planned Parenthood of government funding.

Paxton made his feelings clear about abortion as he pursued an investigation of Planned Parenthood in Texas. During a July 29, 2015, legislative hearing, he said “the true abomination in all of this is the institution of abortion.”

“We are rightfully horrified by what we’ve seen on these videos,” Paxton said. “However these videos also serve as a larger reminder that, as a society, we’ve turned a blind eye to the gruesome horrors that occur in abortion clinics across America every single day. They remind us that this industry as a whole has lost the perspective of humanity.”

Planned Parenthood denied selling fetal tissue and other claims in the videos, some of which contained graphic footage. It said the videos were “deceptive” and heavily edited to be misleading. A grand jury in Texas cleared Planned Parenthood of wrongdoing.

Daleiden worked on the center’s “Human Capital Project” for years, receiving advice from Leo and his associates, according to the Center for Medical Progress’ website, and Daleiden’s email correspondence and other documents produced as part of the separate lawsuit in federal court in California.

The July 2018 document filed as part of the litigation in California describes emails between Leo and Daleiden as “providing legal communication with counsel regarding legal planning” and “for counsel to provide legal advice regarding investigative journalism methods and the legality of fetal tissue procurement practices,” among other descriptions. Daleiden sent one email to Leo “regarding legal planning” on July 13, 2015, the day before the Center for Medical Progress released its first video.

A November 2018 letter from the Center for Medical Progress’ lawyers stated “CMP was receiving legal advice” from Leo, as well as other conservative lawyers and organizations. Lawyers representing the center and Daleiden in a December 2018 legal filing said Leo “provided legal advice on how to ensure successful prosecutions of the criminal actors which CMP identified.”

In its defense, Planned Parenthood has said it billed the Texas Medicaid program for reimbursement for “lawfully provided” services from February 2017 to March 2021 as a participating Medicaid provider in the state.

In 2015 and 2017, federal courts in Louisiana and Texas blocked those states from terminating Planned Parenthood’s Medicaid provider agreements. Judge John deGravelles of the U.S. District Court for the Middle District of Louisiana said the state was prohibited “from suspending Medicaid payments to [Planned Parenthood Gulf Coast] for services rendered to Medicaid beneficiaries.”

The 5th Circuit Court of Appeals in November 2020 vacated the Texas and Louisiana injunctions, but the court never weighed in on clawing back Medicaid funds that had been paid to clinics. Texas terminated Planned Parenthood in March 2021, following a state court ruling.

Texas and the whistleblower argue that, once the court injunctions were lifted, Planned Parenthood’s termination from each state’s Medicaid program became effective years earlier — 2015 in Louisiana and 2017 in Texas — due to the dates that state officials gave clinics final notice.

Planned Parenthood has argued that it is under no obligation to return payments received while injunctions were in place. Kacsmaryk disagrees. In a recently unsealed summary judgment order in the case, the judge wrote that Planned Parenthood clinics “had an obligation to repay the government payments they received as a matter of law.”

The order was unsealed after attorneys for the Reporters Committee for Freedom of the Press intervened. The committee argued the public has a presumptive and constitutional right to access judicial records, and that Kacsmaryk’s stated concerns — which included the tainting of a potential jury pool or jeopardizing the safety of those involved in the lawsuit — didn’t justify keeping the document secret.

Kacsmaryk’s brief justification for sealing the document, contained in the order itself, “was very thin,” said Katie Townsend, legal director for the Reporters Committee for Freedom of the Press.

She said his decision to seal such an important document was “highly unusual” and “very troubling.”

“Those orders are almost always completely public,” she said.

What Paxton Gains

Paxton has publicly toyed with the idea of pursuing federal office, and former President Donald Trump has said he’d consider him for U.S. attorney general should Trump return to the White House.

For Republicans in Texas, there are political benefits to going after Planned Parenthood, said Mark Jones, a political scientist at Rice University in Houston. “Doing anything punitive against Planned Parenthood and anything that would reduce the ability of Planned Parenthood to be active and effective in Texas is going to be greeted with near-universal consensus within the Republican primary electorate,” Jones said. “There’s no downside to it.”

The Republican Attorneys General Association, which can accept unlimited political donations that it distributes to candidates, is a Paxton supporter. Campaign finance records show it gave more than $730,000 to Paxton’s attorney general campaigns in 2014 and 2018.

Tax filings show that the Marble Freedom Trust, a political nonprofit where Leo serves as trustee and chair, gave the Concord Fund $100.9 million from May 2020 through April 2023. During the 2022 election cycle, the Concord Fund gave $6.5 million to RAGA, which then contributed $500,000 to Paxton’s campaign. It was tied as the highest contribution to the Texas attorney general, matched by a $500,000 contribution from a political action committee backed by conservative Texas billionaires, according to Transparency USA, a nonprofit that tracks spending in state politics.

RAGA has praised Leo’s role, calling him its “greatest champion.”

“Leonard Leo has helped shape the trajectory of RAGA and the conservative legal movement more than anyone else. As RAGA’s greatest champion, Leonard Leo reimagined the role of the state attorney general and promoted men and women dedicated to the persistence of the rule of law and the original meaning of the Constitution,” reads a RAGA website post from 2019 that has since been deleted.

“You want access to Leo because Leo gives you access to money,” said Chris Toth, former executive director of the National Association of Attorneys General.

In many conservative states like Texas, Toth said, “the issue is worrying about getting primaried. And that is where playing nice with Leonard Leo and the Concord Fund come in because if you’re on their side, basically, you’re going to have no problem getting reelected.”

The Concord Fund gave $4 million to RAGA between July 1, 2022, and June 30, 2023, four times what it gave the prior fiscal year.

Abortion rights supporters have warned that they anticipate ongoing reproductive health battles in Texas and beyond, with access to contraception, fertility services, and other types of care under threat.

As an example, some point to the Griswold v. Connecticut decision from 1965, in which the Supreme Court legalized the use of contraception among married couples. The high court ruled that a state law violated a constitutional right to privacy, a rationale that was central to Roe v. Wade eight years later.

In a 2017 speech at the Acton Institute, a conservative think tank, Leo criticized Griswold as a decision amounting to “the creation of rights found nowhere in the text or structure of the Constitution.”

The Planned Parenthood lawsuit in Texas is expected to go to trial, potentially this year. The central question is whether Planned Parenthood knowingly withheld money owed to the government.

All the while the public is expressing greater uncertainty about rights once considered constitutionally guaranteed. In a KFF poll conducted in February, 1 in 5 adults said the right to use contraception is threatened and likely to be overturned.

Fewer than half of adults considered it to be secure.

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 HostJulie RovnerKFF 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.On September 2, 1974, President Gerald Ford signed into law the Employee Retirement Income Security Act, better known as ERISA. While the law was primarily intended to regulate and protect worker pensions, it also fundamentally changed how health insurance is provided and regulated in the United States. Fifty years on, ERISA plays a role in nearly every detail of health insurance and has had a profound impact on the entire health care sector.

To note this anniversary, in this week’s special episode of KFF Health News’ “What the Health?”, host and KFF Health News chief Washington correspondent Julie Rovner discusses the law’s past, present, and future with three experts on ERISA: Larry Levitt of KFF, a health information nonprofit that includes KFF Health News; Paul Fronstin of the Employee Benefit Research Institute, a nonprofit; and Ilyse Schuman of the American Benefits Council, a trade group advocating for employers that sponsor worker benefit plans.

click to open the transcriptTranscript: Happy 50th, ERISAKFF Health News’ ‘What the Health?’ Episode Title: ‘Happy 50th, ERISA’ Episode Number: 360Published: Thursday, Aug. 15, 2024

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News. Usually, I’m joined by some of the best and smartest health reporters in Washington, but today, we have a special episode for you. We’re taping this week on Monday, Aug. 12th, at 2 p.m. As always, news happens fast, and things might’ve changed by the time you hear this — although this time, I hope not. So here we go.

So if you follow health policy, you’re likely familiar with the big federal laws that have shaped how health care in the U.S. is organized and delivered and paid for. Medicare and Medicaid in 1965, HIPAA in 1996, and the Affordable Care Act in 2010, just to name a few.

One you may not have heard as much about is ERISA, the Employee Retirement Income Security Act, which was signed in 1974 by then-President Gerald Ford. This fall marks 50 years since ERISA became law. ERISA, as its name suggests, is mostly about protecting pension benefits for workers. It was inspired, at least in part, by the collapse of a pension fund when a plant that built Studebaker cars in Ohio shut down in 1963. But, at least as legend has it, at the very last minute in the House-Senate Conference in 1974, someone decided to add health benefits to ERISA’s scope, and that literally changed the entirety of how health benefits are regulated in the U.S.

I am pleased to have an all-star panel here to join us to talk about what ERISA has meant to health policy and what it’s likely to mean going forward as it begins its second half-century. Larry Levitt is executive vice president for policy here at KFF and one of only a few people in the organization even nerdier than I am about things like ERISA. Paul Fronstin is director of health benefits research at the Employee Benefit Research Institute, a nonpartisan think tank that does research and education. Paul has also taught me more about ERISA over the years than probably any other single person.

Finally, Ilyse Schuman is senior vice president of the American Benefits Council, which represents large employers and other providers of health and retirement benefits through employer-sponsored plans. Ilyse also spent several years on Capitol Hill working on the Senate committee that oversees ERISA policy. So, a lot of knowledge here in our podcast box. Thanks for all of you for being here.

Ilyse Schuman: Thank you

Larry Levitt: Great to be here.

Rovner: So let’s start at the beginning. How did health benefits wind up being covered in a law that was aimed at retiree pensions?

Paul Fronstin: None of us were here or there at the time, so I think anything we know is second- or third-hand information. And like you said, the provision was inserted at the last minute, but I think there were a lot of conversations about it leading up to it being inserted at the last minute. I think a lot of it had to do with some tensions between state regulation and federal regulation, because there were self-insured health plans in existence and self-insured benefits more generally in existence before ERISA passed.

And clearly those plans wanted some federal protection regarding what they were doing, and the states wanted more regulation. And I’ve read a little bit about this over the years, and there was certainly some lobbying for and against having a provision in there to protect self-insured plans from state regulation. So the conversations were happening. It just … the language probably just didn’t make it into the legislation till the last minute.

Schuman: And I think certainly the landscape back in 1974, as Paul talked about, was that more and more states were creating, with respect to health care, their own versions of various laws. And so self-funded plans, large employers like our members — a number of them were back in existence 50 years ago, some weren’t — were finding it increasingly difficult to be able to administer their self-funded plans on a uniform basis nationwide.

So it wasn’t in the backrooms when they were actually drafting the legislation, but certainly note that the nationwide landscape in this growing patchwork of state health laws was becoming increasingly problematical for self-funded health plans.

Levitt: Yeah. I mean, this was also a period when health insurance was changing quite dramatically. I mean, before this time health insurance was pretty simple. It was called indemnity insurance, right.

You went to the doctor, you went to the hospital, you got a claim, you filed it with your insurance company, and they paid 80% of it. This was a time when PPOs [preferred provider organizations] were starting, managed care, HMOs were really just getting their start. So there was a need for much more regulation because insurance was getting more complicated.

Fronstin: Yeah. To some degree, the HMO Act of, what, 1973, right, just the year before. So HMOs were just coming on the scene, and that may have played into this as well.

Rovner: So back in 1945, when really none of us were in the room, Congress passed something called the McCarran-Ferguson Act, which was supposed to ensure that states rather than the federal government retained the authority to regulate insurance. What happened in ERISA to change that? Ilyse, I think you were already sort of referring to this. And what do we mean when we talk about ERISA preemption? That’s a phrase that people hear a lot and their eyes glaze over.

Schuman: Sure. Well, their eyes may glaze over but it really is foundational to millions of Americans and their families that are covered by employers who decide that they want to self-fund their plans. That means that they’re the ones that decide that, “Hey, we’re going to take the risk as offering these benefits instead of the carrier.”

Rovner: So they’re not actually buying insurance because …

Schuman: That’s …

Rovner: … they’re paying the bills.

Schuman: They’re doing more than just paying the bill. They’re the ones that are ultimately assuming the risks of those claims, too. And I think the value. So maybe — just to step back before we talk about what a preemption is — is what we talk about employers who decide to self-fund versus those that don’t. Admittedly, many of those that self-fund are larger employers, but again, they say that “We will take the risk of paying for the claims of our health insurance coverage instead of the carrier. But along with that, we get the flexibility and we get the ability to design and implement health coverage that we think meets the needs of our population. That’s enabled us to” — speaking again from self-funded employers — “to implement innovative designs with the assurances that they could implement those, they could administer that on a uniform basis nationwide.” So that’s really what we’re talking about. Preemption is the ability of self-funded employers to administer those benefits on a uniform basis nationwide.

And yes, getting back to McCarran-Ferguson, and if you want to talk through the sort of various layers of ERISA preemption, is there’s something called the savings clause, which is OK. So ERISA says: “First threshold level, we are going to preempt state laws.” But there’s a savings provision that says basically: “If you’re in the business of insurance, states can regulate that.” But then there’s this deemer clause — this is really nerdy now, so some of your audience may be wondering here what we’re talking about …

Rovner: I remember learning this many, many years ago.

Schuman: No. Yeah. So if you’re in law school, take note that the deemer clause means that self-funded group health plan is deemed not to be in the business of insurance; meaning that they don’t have to comply with those state insurance laws.

Levitt: And here’s where this gets really tangible for people, right? So 150 million people have insurance coverage through an employer. It’s the biggest source of health coverage. But 65% of them are in self-insured plans, like Ilyse was talking about. And those self-insured plans are exempt from state regulation.

So if a state is regulating insurance, let’s say mandating benefits, mandating coverage of IVF, mandating coverage of preventive care, mastectomies, whatever — those regulations that states are putting in place do not apply to most people with employer-sponsored insurance because they are in these self-funded plans.

Rovner: And, of course, the continuing complications that a lot of people who are in these self-funded plans don’t know it because they have an insurance card and it says Blue Cross or Aetna or whatever, because, in their case, they have an insurance card, but the insurer is not providing insurance, right?

Levitt: No, it’s remarkable. We did a survey of consumers about their experiences with health insurance. And we asked them, “What government agency do you think you would turn to with a problem with your insurance?” And literally zero people said the Department of Labor, which is the government agency that actually enforces ERISA.

Rovner: But I guess what I was asking about are third-party administrators, which I think most people have never heard of until they discover that they’re not subject to their state’s requirement.

Levitt: Absolutely. I mean, it gets really confusing, right? Because it might be that UnitedHealthcare is administering this self-funded plan, but you, as an employee in this plan, have no way of really understanding is that a self-insured plan administered by UnitedHealthcare? Or is that an insurance plan administered by UnitedHealthcare? And then there are these third-party administrators that you’ve never even heard of that are administering them for many employers.

Rovner: Paul, you wanted to add something.

Fronstin: We need to distinguish between ERISA and self-insured plans, right, because they’re not one and the same. ERISA also covers fully insured plans.

Schuman: Right.

Fronstin: So fully insured plans are regulated both by ERISA and at the state level. And then you’ve got some self-insured plans like government plans that are not covered by ERISA, right? But they’re self-insured. So it’s even more complicated than what we’re making it out to be when we talk about ERISA, preemption, and self-insurance. That’s just one aspect of ERISA.

Schuman: And I think to the point about employees not sure what covers them, what doesn’t cover them. Again, for self-funded large employers, I mean, I think most of the employees understand from their employer, from the group health plan, what the terms of the plan are, and what the benefits are. And I think in some ways, perhaps less complex than, OK, if you’re an employee working in Kentucky, you have one plan. If you’re an employee working in New York, you have another plan. And employees talking to each other and saying, “Hey, how come you have that and I don’t have this?”

So I think that the clarity or the consistency is important not just for employers who are administering the plan, but for employees understanding what the terms of the plans are. And also, two things about sort of the benefits and what’s covered. There’s a difference between a state saying, “OK, you have to cover this benefit and have to cover it in precisely this way” versus employers who say, “Look, it’s really important for our population, to be healthy and productive, to have these benefits, and so we’re going to offer this benefit. We’re just going to do it in the same way nationwide.”

And remember, ERISA, if the federal government, as it has done over the past, wants to make changes to … that are applicable to group health plans, it can amend and has amended ERISA to do that. So the market reforms, for example, in the Affordable Care Act, were applicable, and the Public Health Service Act, were sort of incorporated into ERISA. The Genetic Information Nondiscrimination Act, for example, amended ERISA. So it’s like that’s the lever to make changes to ERISA that will be applicable to self-funded plans as well is at the federal level.

Rovner: When I was first covering Congress in the 19… late-1980s and early-1990s, you didn’t go there. If you wanted to do something about health policy, you didn’t touch ERISA. I think lawmakers were afraid of reopening it and getting into all kinds of fights. Why did that finally change?

Levitt: I mean, I think there was a growing recognition, particularly with the Affordable Care Act, that there were just some minimum thresholds that health coverage had to meet to be legitimate coverage. So if you look at what the ACA did, and as Ilyse said, those applied to all employers, all group health plans through the amendments to ERISA.

And these were things like no preexisting condition exclusions, coverage of preventive services with no patient cost sharing, no annual on lifetime limits, a cap on out-of-pocket costs. And probably the most popular provision of the ACA, coverage of dependents up to age 26. There was no way to reach everyone with insurance without amending ERISA under the Affordable Care Act.

Fronstin: Yeah. But there were examples, pre-ACA, that affected all plans, or most plans, like mental health parity we didn’t mention. Well, there’s been a couple of instances of that. And certainly the Clinton health plan tried this and didn’t succeed in the early 1990s.

Rovner: And HIPAA …

Levitt: I mean …

Rovner: … which was, I guess, the first major walk into ERISA since ERISA had been passed.

Levitt: Right. Or even COBRA. The ability to continue your insurance after you leave an employer was an amendment to ERISA.

Rovner: That’s right. And that was in 1986.

Fronstin: Yeah, and even that could be confusing because it exempts smaller employers, right. But you got the mini-COBRA laws at state level that affect some of those employers, but not every state has one.

Rovner: Yeah. And Paul, you were referring to this. We should probably talk about who’s not subject to ERISA because I don’t think anybody mentioned church plans. There’s a rule, and then there’s all these exceptions.

Fronstin: I think the two major categories are church plans, and I’m not sure we even have a good handle on how many people are covered by church plans because a lot of them tend to be small businesses, and they may not even offer coverage. And federal, state, and local government. I’m not sure if there’s another category in there that’s not covered by ERISA. I believe that the state and local governments have their own law that’s similar to ERISA, but it’s not ERISA.

Schuman: And I think when we talk about covered by ERISA, certainly it’s, What does ERISA afford? It’s not just about self-funded employers being able to offer uniform benefits nationwide. There are important protections. There are important disclosure requirements for employees, for participants that are included in there that are applicable to all ERISA plans, self-funded and insured plans, and obviously on the retirement plans, too.

But I just think it’s really important that we look to see the idea behind ERISA was that, yes, there will be this uniformity for self-funded plans. But for all ERISA plans, there are these protections and safeguards in there that are embedded in the law for the benefit of participants.

Rovner: And that’s why you used to get a phone-book-thick, “This is your plan documentation.” Now, it’s all online, and it’s all in 4-point type. But that’s where that comes from, right? At the requirement that you be told everything that your plan covers.

Schuman: Right. Correct.

Rovner: So, Larry, you kind of referred to this earlier. Self-funded ERISA plans are regulated not by the states but by the Department of Labor, which most people don’t know. And for a long time, if you were injured or someone died as a result of being denied care, the only thing that they could recover was the cost of the care that was denied. Not any damages for what happened. When did that finally change? And has it finally changed? What do you do now if you’re injured — you can’t go to your state regulatory agency?

Levitt: No, there have been some changes to that, but enforcement of ERISA is still relatively light at the administrative level compared to what state insurance departments do. And the Department of Labor just seems very far away to people compared to a state insurance department.

I think it’s really this structure of ERISA that, Julie, you said people were always resistant to amending in Congress, that has been resistant to amendment, right? I mean, this idea that states regulate insurance directly but that states cannot regulate group health plans under ERISA. And that’s had far-reaching health policy implications. So states looking to do employer mandates or anything that directly affects those group health plans, employer health plans, and that’s maybe …

Rovner: Also, states looking to do single-payer plans, right?

Levitt: Yeah. No, I mean, single-payer there might be some ways around ERISA through single-payer and taxation, but ERISA has been a barrier to state health reform efforts, for better or for worse.

Schuman: If maybe we can just step back 50 years, I think it’s … I wrote down this quote from one of the authors of ERISA, specifically on the ERISA preemption, and that was by Rep. John Dent, who was a Democrat from Pennsylvania who identified the ERISA preemption as the law’s crowning achievement.

And he said it was the crowning achievement because, without it, the legislation would not have enjoyed the support of both labor and management since it’s so fundamental for the ability of multistate employers to sponsor benefit plans to workers nationwide. So I think just kind of getting back into the minds of the drafters of ERISA, that bargain, if you will, that became ERISA preemption was really foundational to the law passing.

Rovner: And you could see why it would make sense. If you work for a national company and you get transferred from one state to another, your insurance shouldn’t change dramatically.

Schuman: Yeah. And I think fast-forward 50 years, and we’ve got, certainly, post-pandemic or after the pandemic, an increasingly mobile and remote workforce. And we have heard repeatedly about how ERISA preemption really promotes that worker mobility and the ability to work out of your house in another state or to be able to transfer from one location to another.

So think a little bit if we just see how the workforce itself has evolved, I think that ERISA preemption provision may become even more important. And I think increasingly, it’s not just large employers that find themselves — like nationwide or multistate employers — but because the workforce is more remote and mobile, and wants to be, that more and more employers of multistate employers, too.

Levitt: I would say we have increasingly seen smaller employers self-funding, and there are some advantages to that, right? They don’t necessarily have to pay premium taxes to states, and they are exempt from state benefit mandates that apply over and above beyond the Affordable Care Act. I mean, insurers have come up with very creative ways of allowing smaller businesses to self-fund and avoiding some of the risk by layering lots of reinsurance on top of that.

Fronstin: I was going to say, along with self-funding comes ease of administration here. Ilyse, you call it uniformity of benefits. But I think of employers, they don’t want to be offering 50 different health plans in 50 different states. And to the degree you’ve got the states doing something — whether it’s a single-payer or something short of that — employers, they just want to offer everyone the same benefit and make it as easy as possible to do so.

And my concern is if they had to comply with 50 different state laws to do so or create 50 different benefit plans, especially today with the ACA guaranteed issue and subsidized coverage, you’ll get to the point where if employers didn’t have the ability to provide one benefit plan across all 50 states, they’re not going to do it anymore, right? They’ve got … pre-ACA might’ve been different, but now they’ve got an alternative where their employees could get coverage if they didn’t offer coverage themselves.

Rovner: So that was all predicted. This huge movement away from employer-provided coverage after the ACA passed was predicted, and it didn’t happen.

Fronstin: I was one of those people predicting it. Yeah. Before the ACA passed, I was one of those people predicting it. And I think what happened is: One, being employers, they still value the benefit. They still understand there are business reasons to offer it, and they haven’t had a good excuse to get rid of it.

We haven’t had — other than the recession tied to covid — we haven’t had a recession. Our unemployment rate has been at historically low rates. And I think employers, they don’t want to mess with something that’s working for the most part because they use it to recruit and retain employees for the same thing they were doing back in the 1940s and ’50s when they first started offering it.

Schuman: I think it’s important to delineate the employer voice in here. And I think maybe there’s a perception that employers are just writing the checks or employers and health plans are kind of conflated. But employers are doing a lot more than just writing a check. And I think those, again, that have decided to self-fund want to be able to have control over how they’re spending their health care dollars. So again, they can try to drive more affordable, higher-value, higher-quality health care.

And so it’s not just about who writes the check, but the reasons behind employers saying, “Hey, we’re going to be spending … we spend a whole lot of money on our health benefits because we recognize that it’s good business. It’s good for employees. But we want to be able to have the ability to try to drive improvements in that to drive higher-value care.” And so that’s enabled by ERISA. So the health reforms and the health innovation, certainly there’s a lot coming from the states, but there’s a lot coming from employers, too.

Rovner: So what are the big issues going forward for ERISA? I mean, obviously, there’s still, if you Google ERISA, you get all kinds of lawsuits and challenges. And I mean, it’s still a very lively part of the law 50 years on.

Levitt: I mean, I think, Julie, you mentioned these lawsuits, and that is potentially a big issue going forward. Something called the Consolidated Appropriations Act added some transparency in fees that self-insured employer plans paid to providers. And that’s opened the door to some lawsuits challenging whether group health plans, ERISA plans, are acting as appropriate fiduciaries in trying to get the lowest costs, particularly for prescription drugs. And these started out as kind of a fringe movement, but I think pose some potential risks for group health plans.

Rovner: Ilyse, what are employers most concerned about?

Schuman: Well, I think that employers seeing the growing number of states that are trying to chip away, if not erode in a fundamental way, ERISA preemption is really alarming. A lot of these efforts have come up around pharmacy benefit managers and efforts to regulate pharmacy benefit managers at the state level.

But the way that they’ve done it, the states have really taken direct aim at ERISA preemption and self-funded plans and, I think, has much broader implications for self-funded group health plans beyond just the PBM context. And so I think that they’re looking at the growing number of states that are interested in passing laws that really erode ERISA preemption as very alarming.

Rovner: So I want to go around the table before we end. Sort of what do you think has been the biggest impact on the health system of ERISA, both for good and for not so good? I mean, it’s certainly one of the things that makes it so confusing to understand and explain. Larry, you want to go first?

Levitt: I think the biggest impact of ERISA has been putting the brakes on some state health reform efforts. States have found ways to get around it. Some raise some issues for employers, like Ilyse was saying, but it has really circumscribed what states can do around health reform. That said, ERISA has provided a very stable regulatory environment for employers and likely allowed employer coverage to grow over time in that environment.

Rovner: Paul?

Fronstin: Yeah, I’d say, in addition to that, it’s allowed employers to be innovative. Not every self-insured employer has been innovative, right? And there’s something like a million employers out there with a thousand or more employees. And the smaller of those are not necessarily being innovative, but they’re learning from the largest ones, right? The jumbo employers, who are trying to do different things when it comes to engaging the health system, right? Engaging hospitals and physicians and pharmaceutical managers.

And I think that that … the lessons learned from what they’re doing trickles down to the smaller self-insured employers, and it trickles out to the health insurers that are offering fully insured plans to small employers.

Rovner: Ilyse.

Schuman: I think ERISA has allowed employers to provide value-driven, comprehensive, affordable, higher-quality health coverage to working families across the country — 150 million, 180 million, guess it depends what stats you’re looking at, and that it’s withstood the test of time.

And I think that probably no stressor, like the pandemic, where many wondered what would emerge from that, and with some dents, but also with a lot of silver linings in terms of employers offering benefits to help their employees navigate through the pandemic. And so I think there’s a resiliency to the employer-sponsored system coupled with the innovation that Paul has mentioned.

Rovner: Last question. Yes or no? Is ERISA going to be around in another 50 years? In other words, are we still going to have this system of health coverage? I promise I will not hold you to it. Just best guess. Larry.

Levitt: I say no.

Rovner: Paul.

Fronstin: I answer “don’t know.”

Rovner:: That’s OK. Ilyse.

Schuman: Well, I will say that I just recently got a tortoise for my family that I’ve found will live 50 or 100 years, so beyond me. So will ERISA be around as long as Veggie, the tortoise? I don’t know.

I think that there’s really an important inflection point. And I think if addressing some of the underlying drivers of rising health care costs and consolidation, I think that if those are addressed, I think employer-provided coverage certainly has the ability to withstand the test of time over the next 50 years.

Rovner: Good. Thank you all so much. This has been great.

Schuman: Thanks a lot.

Levitt: Great. Thanks, Julie.

Schuman: Thank your team.

Levitt: Thanks all.

Schuman: Bye-bye.

Fronstin: Take care, everybody.

Levitt: Bye.

Rovner: Bye. OK, that’s our ERISA anniversary show. Big thanks to our guests, Larry Levitt of KFF, Paul Fronstin of EBRI, and Ilyse Schuman of the American Benefits Council. And before we go this week, we’re looking for your help on a project here at KFF Health News. Are you a young adult confused about navigating the exchanges used to pick plans? Have you bought a plan on an ACA exchange and found that it didn’t cover care you needed? Have you married or taken a job just to get insurance? Did you decide to go without coverage?

Whatever your story, KFF Health News and The New York Times want to hear it. Email your experience to Elisabeth Rosenthal — that’s elisabethr with an S, not a Z — @kff.org. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks, as usual, to our technical guru, Francis Ying, and our editor, Emmarie Huetteman. As always, you can email us your comments or questions. We’re at whatthehealth, all one word, @kff.org, where you can still find me. I’m @jrovner on X. We’ll be back in your feed next week. Until then, be healthy.

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A seis meses de que las chispas de una bala quemaran las piernas de Gabriella Magers-Darger en el tiroteo del desfile del Super Bowl de los Kansas City Chiefs, la joven de 14 años está lista para dejar atrás el pasado.

Enfrenta los desafíos de ser una estudiante de primer año de secundaria, aunque también está emocionada de reencontrarse con sus amigos y volver a bailar y a jugar voleibol. Incluso podría unirse al equipo de lucha libre para ganarse el respeto en la escuela.

Pero el pasado sigue presente.

En una reunión del 4 de julio, un amigo de la familia llevó auriculares que amortiguan el ruido, por si los fuegos artificiales eran demasiado para ella. A principios del verano, Gabriella tuvo dificultades para ver la colección de armas de un pariente, especialmente las pistolas. Y comenzó a hiperventilar cuando vio la herida en el dedo de un amigo de la familia que se había cortado accidentalmente: la vista de la sangre le recordó a Lisa Lopez-Galván, quien murió por una herida de bala afuera de Union Station, la única fatalidad ese día.

Su madre, Bridget Barton, dijo que Gabriella ha tenido una actitud más dura desde el desfile. “Ha perdido algo de suavidad, algo de dulzura”, observó.

Los niños son particularmente vulnerables al estrés de la violencia con armas de fuego, y 10 de las 24 que sufrieron heridas de bala en el desfile del 14 de febrero tenían menos de 18 años. Muchos más niños como Gabriella experimentaron el trauma de primera mano. Enfrentan miedo, ira, problemas de sueño e hipersensibilidad a las multitudes y los ruidos.

Una adolescente de 15 años que recibió disparos en la mandíbula y el hombro prácticamente dejó la escuela por un tiempo, y los ataques de pánico diarios también le impidieron asistir a la escuela de verano.

Un niño de 11 años que recibió un disparo describió sentirse enojado en la escuela por razones que no podía explicar. Una niña de 5 años que estaba sobre los hombros de su padre cuando le dispararon entra en pánico cada vez que su papá se siente enfermo, temiendo que le hayan disparado de nuevo.

“No es la misma niña. Quiero decir, definitivamente no lo es”, dijo Erika Nelson, madre de Mireya, de 15 años, quien tiene cicatrices en la mandíbula y la cara. “Nunca sabes cuándo va a estallar. Nunca sabes. Podrías decir algo o alguien podría mencionar algo que le recuerde ese día”.

En 2020, las armas superaron a los accidentes automovilísticos como la principal causa de muerte de niños, pero un número mucho mayor sufren heridas de balas y sobreviven. La investigación sugiere que los niños sufren lesiones por armas de fuego no fatales entre dos y cuatro veces más a menudo de lo que son asesinados con armas.

Científicos dicen que los efectos a largo plazo de la violencia armada en los niños se investigan poco y son mal comprendidos. Pero el daño es generalizado. Investigadores de Harvard y del Hospital General de Massachusetts encontraron que durante el primer año después de una lesión por arma de fuego, los sobrevivientes infantiles experimentaron un aumento del 117% en trastornos del dolor, del 68% en afecciones psiquiátricas y del 144% en adicciones. Los efectos en la salud mental se extienden a madres, padres y hermanos.

Para muchos afectados por el tiroteo en Kansas City, Missouri, los desencadenantes comenzaron de inmediato.

“Me enojo fácilmente”

A solo 10 días que Samuel Arellano fuera baleado en el desfile, fue a otro gran evento deportivo.

Samuel fue invitado a un partido de baloncesto masculino de la Universidad de Kansas en el Allen Fieldhouse en Lawrence. Durante un descanso del partido, con una cámara de video apuntando a Samuel y a sus padres, Jalen Wilson, ex estrella de KU, apareció en la pantalla y se dirigió a él directamente.

“Escuché tu historia”, dijo Wilson, que ahora juega en la NBA, desde la pantalla gigante. “Estoy muy agradecido de que estés aquí hoy, y es una bendición que podamos tenerte para brindarte el amor y apoyo que realmente mereces”.

Wilson pidió a los 16,000 fans presentes que se pusieran de pie y aplaudieran a Samuel. Mientras la multitud aplaudía y un locutor exclamaba que era un “joven valiente”, Samuel miró a sus padres, luego al suelo, sonriendo tímidamente.

Pero minutos después, cuando el partido se reanudó, Samuel comenzó a llorar y tuvo que salir del auditorio con su madre, Abigail.

“Cuando se puso bastante ruidoso, fue cuando comenzó a desmoronarse de nuevo”, dijo su padre, Antonio. “Así que ella tuvo que salir con él por un momento. Así que cualquier lugar ruidoso, si es demasiado fuerte, lo afecta”.

Samuel, que cumplió 11 años en marzo, fue baleado a la altura de las costillas en su lado derecho. Ahora, la cicatriz en su espalda es apenas perceptible, pero los efectos persistentes del tiroteo son evidentes. Está viendo a un terapeuta, al igual que su padre, aunque a Abigail le ha resultado difícil encontrar uno que hable español y aún no ha tenido una cita.

En las primeras semanas luego del tiroteo, Samuel tuvo problemas para dormir y a menudo se metía en la cama con su madre y su padre. Solía tener buenas notas, pero eso se volvió más difícil, dijo Abigail. Su personalidad ha cambiado, algo que a veces se ha manifestado en la escuela.

“Me enojo fácilmente”, dijo Samuel. “Nunca he sido así antes, pero si me dicen que me siente, me enojo. No sé por qué”.

Los niños traumatizados a menudo tienen dificultades para expresar emociones y pueden tener arrebatos de ira, según Michelle Johnson-Motoyama, profesora de trabajo social en la Universidad Estatal de Ohio.

“Estoy segura que para ese niño hay una sensación de tremenda injusticia por lo que sucedió”, dijo Johnson-Motoyama.

Especialmente justo después del tiroteo, Samuel tenía ataques de pánico y comenzaba a sudar, contó Antonio. Los terapeutas les dijeron que eso era normal. Pero los padres también lo mantuvieron alejado de su teléfono por un tiempo: había demasiado sobre el tiroteo en las noticias y en internet.

Abigail, que trabaja en un concesionaria de automóviles con Antonio, está ansiosa por ver a su hijo cambiar, por su sufrimiento y tristeza. También está preocupada por sus tres hijas, una de 16 años y gemelas de 13. Su padre, Victor Salas, que estaba con Samuel en el desfile, también estaba devastado después de los hechos.

“Estoy llorando y llorando y llorando por lo que pasó”, dijo Salas en español cuatro días después del desfile. “Porque fue un caos. Eso no significa que las familias no amen a su familia, pero todos huyeron para salvar sus propias vidas. Salvé la vida de mis nietos, pero ¿qué pasa con el resto de la gente? No estamos preparados”.

En el lado positivo, Samuel se sintió muy apoyado por la comunidad en Kansas City, Kansas. Muchas personas de su escuela se acercaron en los primeros días para visitarlo, amigos e incluso un ex conductor de autobús, que estaba llorando. Tiene una “habitación llena de dulces”, dijo Abigail, en su mayoría Skittles, su favorito.

En su cumpleaños, recibió una pelota de fútbol americano autografiada por Patrick Mahomes, mariscal de campo de los Kansas City Chiefs. Lo hizo llorar, algo que ocurre con bastante frecuencia, dijo su padre.

“Hay días buenos y malos, días más normales y fáciles, y luego hay días en los que la familia tiene que estar un poco más atenta y apoyarlo”, dijo Abigail en español. “Siempre ha sido extrovertido y hablador como su madre, pero eso ha cambiado desde el desfile”.

El 4 de julio, disparador de una semana

El 4 de julio fue particularmente angustiante para muchos de los jóvenes sobrevivientes y para sus familias. ¿Deberían comprar fuegos artificiales? ¿Querrían celebrar? ¿Por qué todos los petardos que explotan en el vecindario suenan como disparos?

Este año, Gabriella, de 14 años, necesitó la ayuda de su padrastro, Jason Barton, para encender sus fuegos artificiales, algo que normalmente hace con entusiasmo. En el desfile, como muchas personas, la familia Barton primero confundió el sonido de los disparos con fuegos artificiales.

Y Erika Nelson, madre soltera de Belton, Missouri, temía incluso mencionar la celebración a Mireya, quien siempre ha amado el Día de la Independencia. Eventualmente, Mireya dijo que no quería fuegos artificiales grandes este año y que solo quería que su madre los encendiera.

“Cualquier pequeño desencadenante, quiero decir, podría ser un ligero chasquido, y ella se tensaba”, dijo Erika Nelson.

Patty Davis, gerente de programas para el cuidado informado sobre el trauma en el hospital Children’s Mercy en Kansas City, dijo que incluso clientes suyos que estuvieron en el desfile pero no resultaron heridos todavía se estremecen ante los sonidos de sirenas u otros ruidos fuertes. Es una respuesta poderosa a la violencia armada en general, no solo al desfile.

“No es una respuesta exagerada”, dijo Davis. “De hecho, es muy natural para los jóvenes, y no tan jóvenes, que han experimentado algo similar o han presenciado violencia con armas de fuego”.

“No se trata de un trauma accidental, sino de un trauma perpetrado con fines violentos, que puede provocar un mayor nivel de ansiedad en las personas que lo viven, que se preguntan si volverá a suceder. ¿Y qué tan seguras están?”, agregó.

Reviviendo el instante

Los ruidos extraños, las luces brillantes y las multitudes pueden tomar desprevenidos a los niños y a sus padres.

En junio, Mireya Nelson estaba esperando a su hermana mayor después de un recital, con la esperanza de ver a un muchacho. Su madre quería ir, pero Mireya la hizo callar. “De repente, se escuchó un estruendo muy fuerte”, dijo Erika. “Se agachó y luego se levantó de un salto. Dijo: ‘¡Dios mío, me estaban disparando otra vez!’”. Mireya lo dijo tan fuerte que la gente se quedó mirando, así que fue el turno de Erika de hacerla callar y tratar de calmarla. “Le dije: ‘Mireya, está bien. Estás bien. Se les cayó una mesa. Solo están sacando cosas. Fue un accidente’”, explicó Erika.

Pasaron unos minutos hasta que el shock se disipó y más tarde Mireya se rió de la situación, pero Erika siempre está atenta.

La tristeza inicial de su hija (que veía películas durante horas y lloraba todo el tiempo) se ha transformado en descaro. Medio año después, Mireya bromea sobre el tiroteo, lo que destroza a su madre. Pero tal vez eso sea parte del proceso de sanación, dijo Erika.

Antes del 4 de julio, Mireya fue a Worlds of Fun, un gran parque de diversiones, y la pasó bien. Se sintió bien porque había guardias de seguridad por todas partes. También disfrutó de una visita a la oficina local del FBI con una amiga que estaba con ella el día del tiroteo.

Pero cuando alguien le sugirió ir al ballet, Mireya lo descartó rápidamente: está cerca de Union Station, el lugar del tiroteo. Ya no quiere ir al centro. Erika dijo que ha habido muchas citas médicas y dificultades económicas, y que su mayor frustración como madre es no poder arreglar las cosas para su hija.

“Tienen que seguir su propio camino, su propio proceso de curación. No puedo sacudirla, como diciéndole: ‘Vuelve a ser tú misma’”, dijo Erika. “Podría llevar meses, años. ¿Quién sabe? Podría ser el resto de su vida. Pero espero que pueda superarlo un poco”.

Piel de gallina en medio del calor sofocante

James Lemons notó un cambio en su hija de 5 años, Kensley, que estaba sobre sus hombros cuando le dispararon en el desfile.

Antes del tiroteo, Kensley era extrovertida y comprometida, dijo James, pero ahora está retraída, como si estuviera dentro de una burbuja y se hubiera desconectado de la gente.

A Kensley, las grandes multitudes y los policías le recuerdan al desfile. Ambos estuvieron presentes en una graduación de secundaria a la que asistió la familia este verano, y Kensley solo quería irse. James la llevó a un campo de fútbol vacío, donde, dijo, se le puso la piel de gallina y se quejó de tener frío a pesar del calor sofocante.

La hora de dormir es un problema particular para la familia Lemons. Kensley ha estado durmiendo con sus padres. Otro hijo, Jaxson, de 10 años, ha tenido pesadillas. Una noche, soñó que el tirador se acercaba a su padre y lo hacía tropezar, dijo Brandie Lemons, la madrastra de Jaxson.

Los niños más pequeños como Kensley expuestos a la violencia con armas de fuego tienen más probabilidades de desarrollar un trastorno de estrés postraumático que los niños mayores, según Johnson-Motoyama, de la Universidad Estatal de Ohio.

Davis, del Children’s Mercy en Kansas City, dijo que los niños cuyos cerebros no están completamente desarrollados pueden tener dificultades para dormir y comprender que están seguros en sus hogares por la noche.

James le compró a la familia un nuevo cachorro, un bulldog americano que ya pesa 32 libras, para ayudarlos a sentirse protegidos. “Busqué el pedigrí”, dijo, “Son muy protectores. Muy cariñosos”.

En busca de una salida

Para desahogarse después del tiroteo, Gabriella comenzó a boxear. Su madre, Bridget, dijo que le devolvió algo de la confianza y el control que había bajado después del desfile. “Me gusta golpear a la gente, no de una manera mala, lo juro”, dijo Gabriella en abril mientras moldeaba un protector bucal a sus dientes antes de irse a entrenar.

Sin embargo, desde entonces ha dejado de boxear, por lo que el dinero puede destinarse a un viaje a Puerto Rico con su clase de español. Están pagando $153 al mes durante 21 meses para cubrir el viaje. Las clases de boxeo costaban $60 al mes.

Bridget pensaba que el boxeo era una buena salida para la ira que le quedaba, pero a finales de julio Gabriella no estaba segura de si todavía tenía el impulso para contraatacar de esa manera. “El pasado es el pasado, pero todos vamos a pasar por cosas. ¿Tiene sentido?”, preguntó Gabriella.

“Estás bien en general, pero todavía tienes desencadenantes. ¿Es eso lo que quieres decir?”, preguntó su madre. “Sí”, respondió.

Después del tiroteo, Mireya Nelson probó las clases en línea, que no funcionaron bien. Los primeros días de la escuela de verano, Mireya tenía un ataque de pánico todos los días en el auto y su madre la llevaba de vuelta a casa.

Mireya quiere regresar a la escuela secundaria este otoño, y Erika es cautelosa. “Sabes, si vuelvo a la escuela, existe la posibilidad de que me disparen, porque en la mayoría de las escuelas hoy en día hay tiroteos”, recordó Erika que dijo su hija. “Y yo digo: ‘Bueno, no podemos pensar así. Nunca se sabe lo que va a pasar’”.

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In 2016, medical device giant Abbott issued a recall for its MitraClip cardiac device — “a Class I recall, the most serious type,” the FDA said.

“Use of this device may cause serious injuries or death,” an FDA notice about the recall said.

But neither the manufacturer nor the FDA actually recalled the device or suspended its use. They allowed doctors to continue implanting the clips in leaky heart valves in what has become a common procedure.

In a notice, the manufacturer explained, “Abbott is not removing product from commercial distribution.” Rather, Abbott revised instructions for use and required doctors who implant the clips to undergo training.

When it comes to medical devices, recalls can include not only “removals,” in which the device is removed from where it is used or sold, but also “corrections,” which address the problem in the field — for instance, by repairing, adjusting, relabeling, or inspecting a device.

“It’s very oxymoronic,” said Rita Redberg, a cardiologist at the University of California-San Francisco and former editor-in-chief of the journal JAMA Internal Medicine. “A recall makes it sound like it’s recalled. But that is not actually what it means.”

Though the FDA and federal regulations call these actions recalls, they might be described more aptly as “non-recalls.” And they have happened repeatedly in recent years. For instance, in addition to other Abbott devices, products made by Medtronic, Abiomed, and Getinge have had recalls that left them in use.

Safeguarding the Public

Recalls that leave what the FDA identifies as potentially dangerous products in the marketplace can raise the question: Do they do enough to protect the public?

There are other ways to handle recalls. In announcements about products as varied as crib bumpers, pool drain covers, bicycle helmets, and coffee mugs, the Consumer Product Safety Commission routinely alerts consumers to stop using recalled products and contact the manufacturers for refunds, repairs, or replacements. The National Highway Traffic Safety Administration regularly advises consumers to bring recalled cars back to the dealer to have them fixed. When the U.S. Department of Agriculture and the FDA announce food recalls, they routinely tell consumers to return or discard the food.

In some cases, a medical device that is the subject of a recall can be kept on the market safely because there is a simple fix, said Sanket Dhruva, a cardiologist and an associate professor at UCSF who has studied FDA oversight of devices. In other cases, recalls that don’t remove devices from the market can provide unwarranted reassurance and leave the public at risk, Dhruva said.

From 2019 through 2023, there were 338 Class I medical device recalls, 164 of which were corrections and 174 of which were removals, FDA spokesperson Amanda Hils said.

Some products undergo recall after recall while they remain on the market. Products in the MitraClip line have been the subject of three rounds of recalls, none of which removed devices from use.

“When deciding whether a recall warrants device removal from the field, the FDA considers the frequency and severity of adverse events, effectiveness of the corrective actions that have been executed, and the benefits and risks of preserving patient access to the device,” FDA spokesperson Audra Harrison said.

Where recalled devices have already been implanted, “removal” doesn’t necessarily mean removing them from patients’ bodies. “When an implanted device has the potential to fail unexpectedly, companies often tell doctors to contact their patients to discuss the risk of removing the device compared to the risk of leaving it in place,” the FDA website says.

The FDA allowed the recalled MitraClip devices to remain in use “because the agency believed that the overall benefits of the device continued to outweigh the risks and the firm’s recall strategy was appropriate and adequate,” Harrison said.

The FDA reviews the recall strategies that manufacturers propose and often provides input to ensure the public will be protected, Hils said. The agency also monitors the effectiveness of recalls and, before terminating them, makes sure the strategy was carried out, Hils said.

Abbott, the maker of MitraClip, said the device has been proven safe and effective “based on more than 20 years of clinical evidence and has profoundly improved the lives of people living with mitral regurgitation,” a condition in which blood flows backward through the heart’s mitral valve. The condition can lead to heart failure and death.

“With MitraClip, we’re addressing the needs of people with MR who often have no other options,” company spokesperson Brent Tippen said.

Speaking of the MitraClip recalls, Redberg said, “So hard to imagine these are effective actions in protecting patients.”

In 2021, for Medtronic’s StealthStation S7 cranial software, the company and the FDA sent a different message.

StealthStation is an elaborate system of screens and other equipment that guides neurosurgeons using instruments in the brain — for instance, to biopsy or cut out tumors. Drawing from CT scans, MRIs, and other imaging, it’s meant to show the location of the surgical instruments.

In connection with a Class I November 2021 recall, the FDA website said potential inaccuracies in a biopsy depth gauge could result in “life-threatening injury (such as hemorrhage, unintended tissue damage, or permanent neurological injury), which could lead to death.”

The FDA website explained what Medtronic was doing about it.

“The recalling firm will provide a warning and instructional placard to be applied to impacted systems,” the website said. “Until a software update is available, ensure you are following the instructions below to prevent the issue from occurring,” it advised doctors.

In a statement to KFF Health News, Medtronic spokesperson Erika Winkels said the safety and well-being of patients is the company’s primary concern, and certain issues “can be safely and effectively remedied with a correction on site.”

Richard Everson, a neurosurgeon and an assistant professor at UCLA, noted that the 2021 recall allowed doctors to continue using unaffected StealthStation features, a benefit for patients and facilities depending on them.

“But, I mean, then you could ask, ‘Well, why don’t they just disable the view [of the brain] that’s bugged?’” Everson said. “Why would they give you the option of looking at an inaccurate one?”

“That’s kind of a strange solution,” he said.

The FDA lists the 2021 recall as still open, explaining “not all products have been corrected or removed.”

That recall was not the last word on problems with StealthStation. Since then, the manufacturer has submitted adverse event reports to the FDA describing trouble in cases involving various versions of StealthStation.

In a September 2022 case, guidance provided by a StealthStation device was allegedly off the mark, a procedure was aborted, and, when the patient awoke, they “had almost no speech for two days,” according to a Medtronic report. In the report, Medtronic said there was “insufficient information to determine the relationship of the software to the reported issue.”

In a February 2024 case, after brain surgery, an MRI found that the operation “missed the tumor” and that other tissue was removed instead, according to a report Medtronic submitted to the FDA. In the report, Medtronic said that when a company representative tested the system, it performed as intended.

In March 2024, Medtronic recalled versions of StealthStation S8 without removing them from hospitals. The company said at the time that it would provide a software update.

“Software updates are available to correct the anomalies identified in the 2021 S7 and 2024 S8 recalls and are actively being deployed,” Medtronic’s Winkels told KFF Health News in a July email. “While the software updates for the 2021 S7 recall are complete in the US, they remain ongoing in some international regions.”

In June 2023, Abiomed issued an urgent medical device correction for its Impella 2.5 intravascular micro axial blood pump, which supports the heart. In patients with a certain type of replacement heart valve, there was a risk of “destruction of the impeller blades,” which could cause “low flow” and “embolization of the fractured impeller material,” an entry on the FDA website said.

“Clinicians are cautioned to position the Impella system carefully in patients,” the FDA website said, among other instructions.

The updated instructions “provide technical guidance to mitigate the risk of rare complications,” Abiomed spokesperson Ryan Carbain said. There were no product removals and no reports of adverse events “related to product design or manufacturing,” Carbain said.

Another set of medical devices, Cardiosave Hybrid and Rescue Intra-Aortic Balloon Pumps made by Getinge of Sweden, have failed persistently, according to FDA records.

The devices — which are placed in the aorta, a major artery, to assist the heart — were the subject of eight Class I recalls from December 2022 to July 2023. All were corrections rather than removals, a KFF Health News analysis found.

In a May 2024 letter to health care providers, the FDA said that, in the previous 12 months, it had received almost 3,000 adverse event reports related to the balloon pumps. It was referring to reports of malfunctions and cases in which the products might have caused or contributed to a death or injury. Of those, 15 reportedly involved serious injury or death, the FDA said.

During the summer of 2023, the FDA noted that “alternative treatments are limited” and said the devices could continue to be used.

But, in May, the FDA changed its stance. The agency advised health care facilities to “transition away from these devices and seek alternatives, if possible.”

“These recommendations are based on our continued concerns” that the manufacturer “has not sufficiently addressed the problems and risks with these recalled devices.”

Getinge sent KFF Health News written answers from Elin Frostehav, the company’s president of Acute Care Therapies.

“There is no question that we would have liked to have solved these issues in full much earlier,” she said.

As a result of the FDA’s May action, the company “immediately paused proactive marketing” of the balloon pumps in the United States, and it is selling them only to customers who have no alternatives, Frostehav said.

“We are working with the agency to finalize remediation and product update solutions,” Frostehav said.

‘Known Possible Complications’

Abbott’s MitraClip system includes tiny clips implanted in the heart’s mitral valve and the equipment used to implant them. The apparatus features a steering mechanism with hand controls and a catheter that is threaded through a major vein, typically from an incision in the groin, to place one or more clips in the heart.

Worldwide, more than 200,000 people have been treated with MitraClip, according to an Abbott website.

The 2016 MitraClip recall described cases in which “the user was unable to separate the implantable Clip from the delivery system.”

In a news release at the time, Abbott said it had “received a small number of reports” in which that happened.

Those cases “resulted in surgical interventions to remove the delivery system or replace the mitral valve, and it is expected that any future similar incidents would also require surgery to correct the problem,” the FDA said in a 2016 notice. “There was one patient death in these cases as a result of severe comorbidities following surgery.”

Years later, something similar happened.

In February 2021, a clip was implanted in an 81-year-old patient but the doctor couldn’t separate the clip from the delivery system, according to a report Abbott filed with the FDA. The patient was transferred to surgery, where the delivery system “had to be cut down in order to detach the clip.”

The patient then underwent an operation to replace the mitral valve, and, hours later, the patient was brought back to surgery to address bleeding, the report said.

The patient “coded” the next day and died from an aortic bleed, the report said.

In the report to the FDA, the manufacturer blamed “case-specific circumstances.”

“Cardiac arrest, hemorrhage and death are listed” in the device instructions “as known possible complications associated with mitraclip procedures,” the company said. “There is no indication of a product issue with respect to manufacture, design or labeling.”

The third MitraClip recall, initiated in September 2022, cited an “increase in clip locking malfunctions.”

Most of the reported malfunctions were not associated with adverse outcomes, the FDA said then. Treatment with MitraClip “remains within the anticipated risk levels,” the company told customers.

As with the two earlier recalls, the third advised doctors to follow the device’s instructions. But the 2022 recall identified a contributing factor: the way the device was made.

“Abbott has identified a contributing cause … as a change in the material properties of one of the Clip locking components,” the company said in a 2022 letter to customers.

“Abbott is working on producing new lots with updated manufacturing processing and raw material,” the company wrote. In the same letter, Abbott told doctors that, in the meantime, they could use the devices they had in stock.

Six days later, a clip opened while locked and a patient died, according to a report the manufacturer submitted to the FDA.

“There is no evidence that death was related to the device but it was likely related to the procedure,” Abbott wrote.

Now, almost two years later, the 2022 recall remains open, according to the FDA website, and “not all products have been corrected or removed.”

KFF Health News data editor Holly K. Hacker contributed to this report.

If you’ve had an experience with a medical device and would like to tell KFF Health News about it, click here to contact our reporting team.

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The Affordable Care Act is back under attack. Not as in the repeal-and-replace debates of yore, but in a fresher take from Republican lawmakers who say key parts of the ACA cost taxpayers too much and provide incentive for fraud.

Several House Republican leaders have called on two watchdog agencies to investigate, while Sen. Charles Grassley (R-Iowa) fired off more than half a dozen questions in a recent letter to the Centers for Medicare & Medicaid Services.

At issue are the ACA’s enhanced subsidies, put in place during the covid-19 pandemic as part of economic recovery legislation. Grassley said in a recent news release that the subsidies “left Obamacare, a program already riddled with problems, wide open to new waste, fraud and abuse.”

While potential fraud in government programs has always been a rallying cry for conservatives, the recent criticisms are a renewed line of attack on the ACA because repealing it is unlikely, given that more than 21 million people enrolled in marketplace plans for this year.

“I see what’s happening right now as laying the groundwork for the big fight next year,” said Debbie Curtis, a vice president at consulting firm McDermott+.

The enhanced subsidies are set to expire in late 2025. Without them, millions of Americans would likely see their premiums go up.

But the debate will also likely draw in other issues, including Trump-era tax cuts, which also must be addressed next year. Also potentially in play are other aspects of the ACA, including a special year-round enrollment period and zero-premium plans for low-income consumers.

Much of what eventually happens will depend on the makeup of the Senate and House, as well as control of the White House, after the November elections.

“The fate of the enhanced tax credits is dependent on the Democrats holding some majority in Congress and/or winning the presidency and is also tied inextricably to the Trump tax cut expiration,” said Dean Rosen, a partner at Mehlman Consulting and a former senior Republican congressional staffer. That’s because both sides have incentive to extend all or part of the tax cuts, but each will want some kind of compromise on other issues as well.

The growing outcry by Republicans about the subsidies goes hand in hand with a controversial recent report from a conservative think tank that estimates millions of people — or their brokers — may be misstating their incomes and getting the most generous ACA subsidies.

The Paragon Health Institute report estimates that the number of people who enrolled in ACA coverage for this year who projected they would earn between 100% of the federal poverty level and 150% — amounts that qualify them for zero-premium plans and smaller deductibles — likely exceeds the number of people with that level of income, particularly in nine states.

It recommends several changes to the ACA, including letting the enhanced subsidies expire, increasing repayment amounts for people who fail to project their incomes correctly, and ending the Biden-backed initiative that allows very low-income people to enroll in ACA coverage year-round rather than having to wait for the once-a-year general open enrollment period.

The Paragon report was cited by both Grassley and the House GOP lawmakers in their letters to government overseers. It also notes what they consider a related concern: ongoing problems of unscrupulous, commission-seeking agents enrolling people in ACA coverage or switching their plans without their permission, often into highly subsidized plans. KFF Health News uncovered the enrollment and switching schemes in the spring.

Some critics, though, question how the Paragon analysis was done.

For instance, Paragon’s findings rely on two unrelated data sets from different years. Combining them makes many people who are eligible for subsidies appear to be ineligible, said Gideon Lukens, a senior fellow and director of research at the Center on Budget and Policy Priorities. “The analytic approach is not careful or sophisticated enough to provide accurate or even meaningful results.”

Paragon President Brian Blase, a former senior Trump administration official and a co-author of the report, said it used publicly available data that others could use to confirm its results.

Paragon’s recommendations also drew mixed reactions.

Sabrina Corlette, a co-director of the Center on Health Insurance Reforms at Georgetown University, said they “would make coverage less affordable, disproportionately affecting low-income people, and that’s the opposite of the goals of the ACA.”

Another ACA expert, Joseph Antos of the conservative American Enterprise Institute, agrees with one of the recommended fixes: changing the structure of the subsidies to limit zero-premium plans.

“Giving health insurance away is the problem,” said Antos, who said it is probably contributing to the unauthorized switching by some rogue brokers, who know if they sign someone up for a free plan without their permission, they’re unlikely to get caught for a while because the person won’t get monthly bills.

Another potential solution to people misstating their income is that “the seven or eight states that still haven’t expanded Medicaid should do that,” Antos said. The expansion would open Medicaid eligibility to more people who earn less than the poverty level, reducing the incentive to overestimate their income to qualify for ACA subsidies.

Among other things, the subsidies are larger now for low-income enrollees. For example, families at the poverty level or just above it ($30,000 to $45,000 for a family of four) can currently qualify for coverage with no monthly premium, whereas before they would have had to pay 2% to 4% of their annual income toward such a plan.

President Joe Biden has pushed to make the subsidies permanent and has often touted the record enrollment in ACA plans under his watch. Across all income groups, nearly 20 million people out of 21 million ACA enrollees this year got at least some subsidy, according to a KFF report.

Subsidies, also called premium tax credits, are generally paid directly to health insurers, and applicants must estimate their income for the coming year to qualify.

Those who incorrectly project their incomes — possibly because they work irregular retail hours, are self-employed and give a best guess of business, or get an unexpected raise or a new job — must pay back all or part of the subsidy, on a sliding scale linked to income.

The cost of the enhanced subsidies has been sharply criticized by some GOP leaders after the Congressional Budget Office recently estimated that making them permanent would add $335 billion to the federal budget deficit over 10 years.

Democrats have pointed to another recent CBO report estimating extending the Trump-era tax cuts would add $4.6 trillion to the deficit over 10 years.

The enhanced subsidies “cost a lot less than that and it’s actually helping people,” Curtis said.

Ultimately, “every health care debate comes down to money,” said Larry Levitt, executive vice president for health policy at KFF, a health information nonprofit that includes KFF Health News. “There is a trade-off here. Millions of people have gotten coverage and more affordable premiums due to these enhanced subsidies, but extending them would cost the government a lot of money.”

Despite the attention paid by some GOP lawmakers to the fraud concerns, many political observers say they don’t think they will play a direct role during the election campaigns of either party.

“For Republicans, they’ll stay away from health care period. It is not a winning campaign issue for them,” Curtis said. “With Harris’ campaign, we will see a continued drive for affordable coverage being key, particularly drug costs. In neither party will you hear much about the importance of extending the enhanced subsidies. It’s too complicated.”

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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MOUND BAYOU, Miss. — In the center of this historically Black city, once deemed “the jewel of the Delta” by President Theodore Roosevelt, dreams to revitalize an abandoned hospital building have all but dried up.

An art deco sign still marks the main entrance, but the front doors are locked, and the parking lot is empty. These days, a convenience store across North Edwards Avenue is far busier than the old Taborian Hospital, which first shut down more than 40 years ago.

Myrna Smith-Thompson, who serves as executive director of the civic group that owns the property, lives 100 miles away in Memphis, Tennessee, and doesn’t know what’s to become of the deteriorating building.

“I am open to suggestions,” said Smith-Thompson, whose grandfather led a Black fraternal organization now called the Knights and Daughters of Tabor. In 1942, that group established Taborian Hospital, a place staffed by Black doctors and nurses that exclusively admitted Black patients, during a time when Jim Crow laws barred them from accessing the same health care facilities as white patients.

“This is a very painful conversation,” said Smith-Thompson, who was born at Taborian Hospital in 1949. “It’s a part of my being.”

A similar scenario has played out in hundreds of other rural communities across the United States, where hospitals have faced closure over the past 40 years. In that regard, the story of Mound Bayou’s hospital isn’t unique.

But there’s more to this hospital closure than the loss of inpatient beds, historians say. It’s also a tale of how hundreds of Black hospitals across the U.S. fell casualty to social progress.

The Civil Rights Act of 1964 and the enactment of Medicare and Medicaid in 1965 benefited millions of people. The federal campaign to desegregate hospitals, culminating in a 1969 court case out of Charleston, South Carolina, guaranteed Black patients across the South access to the same health care facilities as white patients. No longer were Black doctors and nurses prohibited from training or practicing medicine in white hospitals. But the end of legal racial segregation precipitated the demise of many Black hospitals, which were a major source of employment and a center of pride for Black Americans.

“And not just for physicians,” said Vanessa Northington Gamble, a medical doctor and historian at George Washington University. “They were social institutions, financial institutions, and also medical institutions.”

In Charleston, staff members at a historically Black hospital on Cannon Street started publishing a monthly journal in 1899 called The Hospital Herald, which focused on hospital work and public hygiene, among other topics. When Kansas City, Missouri, opened a hospital for Black patients in 1918, people held a parade. Taborian Hospital in Mound Bayou included two operating rooms and state-of-the-art equipment. It’s also where famed civil rights activist Fannie Lou Hamer died in 1977.

“There were Swedish hospitals. There were Jewish hospitals. There were Catholic hospitals. That’s also part of the story,” said Gamble, author of “Making a Place for Ourselves: The Black Hospital Movement, 1920-1945.”

“But racism in medicine was the main reason why there was an establishment of Black hospitals,” she said.

By the early 1990s, Gamble estimated, there were only eight left.

“It has ripple effects in a way that affect the fabric of the community,” said Bizu Gelaye, an epidemiologist and program director of Harvard University’s Mississippi Delta Partnership in Public Health.

Researchers have largely concluded that hospital desegregation improved the health of Black patients over the long term.

One 2009 study focusing on motor vehicle accidents in Mississippi in the ’60s and ’70s found that Black people were less likely to die after hospital desegregation. They could access hospitals closer to the scene of a crash, reducing the distance they would have otherwise traveled by approximately 50 miles.

An analysis of infant mortality, published in 2006 by economists at the Massachusetts Institute of Technology, found that hospital desegregation in the South substantially helped close the mortality gap between Black and white infants. That’s partly because Black infants suffering from illnesses such as diarrhea and pneumonia got better access to hospitals, the researchers found.

A new analysis, recently accepted for publication in the Review of Economics and Statistics, suggests that racism continued to harm the health of Black patients in the years after hospital integration. White hospitals were compelled to integrate starting in the mid-1960s if they wanted to receive Medicare funding. But they didn’t necessarily provide the same quality of care to Black and white patients, said Mark Anderson, an economics professor at Montana State University and co-author of the paper. His analysis found that hospital desegregation had “little, if any, effect on Black postneonatal mortality” in the South between 1959 and 1973.

Nearly 3,000 babies were born at Taborian Hospital before it closed its doors in 1983. The building remained vacant for decades until 10 years ago, when a $3 million federal grant helped renovate the facility into a short-lived urgent care center. It closed again only one year later amid a legal battle over its ownership, Smith-Thompson said, and has since deteriorated.

“We would need at least millions, probably,” she said, estimating the cost of reopening the building. “Now, we’re back where we were prior to the renovation.”

In 2000, the hospital was listed as one of the most endangered historic places in Mississippi by the Mississippi Heritage Trust. That’s why some people would like to see it reopened in any capacity that ensures its survival as an important historical site.

Hermon Johnson Jr., director of the Mound Bayou Museum, who was born at Taborian Hospital in 1956, suggested the building could be used as a meeting space or museum. “It would be a huge boost to the community,” he said.

Meanwhile, most of the hospital’s former patients have died or left Mound Bayou. The city’s population has dropped by roughly half since 1980, U.S. Census Bureau records show. Bolivar County ranks among the poorest in the nation and life expectancy is a decade shorter than the national average.

A community health center is still open in Mound Bayou, but the closest hospital is in Cleveland, Mississippi, a 15-minute drive.

Mound Bayou Mayor Leighton Aldridge, also a board member of the Knights and Daughters of Tabor, said he wants Taborian Hospital to remain a health care facility, suggesting it might be considered for a new children’s hospital or a rehabilitation center.

“We need to get something back in there as soon as possible,” he said.

Smith-Thompson agreed and feels the situation is urgent. “The health care services that are available to folks in the Mississippi Delta are deplorable,” she said. “People are really, really sick.”

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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State and local governments have received more than $7.5 billion in opioid settlement funds to date, and everyone’s lining up to have their say in how it’s spent.

Of course, that means there’s also plenty of controversy. The latest development comes this morning, as a coalition of 192 recovery and harm reduction organizations across dozens of states issued a call to action — shared first with KFF Health News — saying the windfall must be spent on public health approaches and “not a single dollar” on law enforcement.

“We’re demanding it be spent in ways that actually solve problems and don’t continue to increase deaths or perpetuate the war on drugs,” said Elizabeth Burke Beaty, founder of the National Sea Change Coalition, one of the groups that led the effort.

Many law enforcement agencies and elected officials disagree, saying officers are on the front lines of the opioid crisis and deserve these dollars.

Opinions are fierce, given the money’s potential to shape addiction treatment and prevention efforts for years. Annual payouts are expected through 2038. Meanwhile, hundreds of thousands of Americans continue dying of drug overdoses.

Every state is handling its funds in its own way, and the federal government, which was not a party to most of the settlements, has remained largely silent.

The document released by advocates today — which they’re calling a “roadmap” to guide officials in charge of the funds — builds on themes that have been resonating nationwide.

It lists priorities such as increasing access to medications to treat opioid-use disorder and overdose prevention centers, where people can use drugs under supervision, as well as housing services, legal aid and recovery-to-work programs. The advocates point to a $1 million allocation to Queen City Harm Reduction in Mecklenburg County, N.C., for housing supports as a good example.

The document also identifies six ways in which advocates do not want money to be spent. Topping the list is funding law enforcement personnel and equipment. Further down are abstinence-only treatment centers, unproven youth-focused prevention programs and services that are already funded through other mechanisms. The advocates call out Jackson County, W.Va., for giving about $290,000 to a law enforcement shooting range.

But not everyone agrees. Some people see harm reduction as enabling drug use. They say law enforcement is a key player in addressing the crisis — especially in rural communities that lack hospitals or treatment facilities.

“Sheriffs are at the forefront of the effects of the opioid crisis, including with response and recovery,” Jonathan Thompson, executive director and CEO of the National Sheriffs’ Association, said in a statement.

An estimated 65 percent of people in prison have a substance use disorder, and over the past decade, sheriffs have “led the way” in providing medical treatment behind bars, Thompson said.

With each group standing firmly behind its perspective, the debate over how to use settlement funds is set to continue for years.

Follow our ongoing coverage of settlement dollars here.

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KFF Health News and KCUR are following the stories of people injured during the Feb. 14 mass shooting at the Kansas City Chiefs Super Bowl celebration. Listen to how children wounded that day are dealing with their injuries or emotional scars.

Six months after Gabriella Magers-Darger’s legs were burned by sparks from a ricocheted bullet at the Kansas City Chiefs Super Bowl parade in February, the 14-year-old is ready to leave the past behind.

She is dreading the pitfalls of being a high school freshman, even as she looks forward to being back with friends and at color guard, dance, and volleyball. She might even join the wrestling team to get some respect at school.

But the past remains ever present.

At a July Fourth gathering, a family friend brought noise-canceling headphones in case the fireworks became too much. Earlier in the summer Gabriella had a hard time viewing a relative’s gun collection, the handguns in particular. And she hyperventilated when she saw a family friend’s finger after it was sliced by accident — the sight of blood reminds her of seeing a fatally wounded Lisa Lopez-Galvan minutes after she was shot outside Union Station, the only person killed that day.

Her mom, Bridget Barton, said Gabriella has had a chip on her shoulder since the parade.

“She’s lost some softness to her, some gentleness to her,” Barton said.

Children are particularly vulnerable to the stresses of gun violence, and 10 of 24 people injured by bullets at the Feb. 14 parade were under 18 years old. Countless more children like Gabriella experienced the trauma firsthand. They’ve endured fear, anger, sleep problems, and hypersensitivity to crowds and noises.

A 15-year-old girl who was shot through the jaw and shoulder effectively dropped out of school for a time and daily panic attacks kept her from summer school, too. An 11-year-old boy shot in the side described feeling angry at school for reasons he couldn’t explain. A 5-year-old girl who was on her father’s shoulders when he was hit by gunfire panics each time her dad feels sick, fearing he has been shot again.

“She’s not the same kid. I mean, she’s definitely not,” said Erika Nelson, mother of the 15-year-old, Mireya, who has scars on her jaw and face. “You never know when she’s going to snap. You never know. You might say something or someone might bring up something that reminds her of that day.”

Guns overtook motor vehicle accidents as the leading cause of death for children in 2020, but a far higher number of kids are hit by gunfire and survive. Research suggests that kids sustain nonfatal firearm injuries anywhere fromtwo to four times more often than they are killed by guns.

Scientists say the long-term effects of gun violence on kids are little researched and poorly understood. But the harm is pervasive. Harvard and Massachusetts General Hospital researchers found that during the first year after a firearm injury, child survivors experienced a 117% increase in pain disorders, a 68% increase in psychiatric disorders, and a 144% increase in substance use disorders. The mental health effects spill over — to mothers, fathers, siblings.

For many affected by the shooting in Kansas City, Missouri, the triggers began right away.

‘I Get Mad Easily’

Just 10 days after Samuel Arellano was shot at the parade, he attended another big sporting event.

Samuel was invited to attend a University of Kansas men’s basketball game at Allen Fieldhouse in Lawrence. During a break in the game, with a video camera pointed at Samuel and his parents, former KU star Jalen Wilson appeared on the scoreboard and addressed him directly.

“I heard about your story,” Wilson, who now plays in the NBA, said on the big screen. “I’m so very thankful that you are here today and it is a blessing that we can have you to give you the love and support you truly deserve.”

Wilson asked the 16,000 fans in attendance to stand and give Samuel a round of applause. As the crowd clapped and an announcer bellowed about him being a “brave young man,” Samuel looked at his parents, then down at his feet, smiling shyly.

But minutes later when the game resumed, Samuel started to cry and had to leave the auditorium with his mom, Abigail.

“When it got pretty loud, that’s when he started breaking up again,” his dad, Antonio, said. “So she had to step out with him for a minute. So any loud places, if it’s too loud, it’s affecting him.”

Samuel, who turned 11 in March, was shot in the ribs on his right side. The scar on his back is barely noticeable now, but lingering effects from the parade shooting are obvious. He is seeing a therapist — as is his father, though Abigail has had a tough time finding a Spanish-speaking one and still hasn’t had an appointment.

Samuel had trouble sleeping in the first weeks after the shooting and often crawled in bed with his mom and dad. He used to get good grades, but that became more difficult, Abigail said. His personality has changed, which sometimes has shown up at school.

“I get mad easily,” Samuel said. “I [have] never been like this before but like, if they tell me to sit down, I get mad. I don’t know why.”

Traumatized children often have difficulty expressing emotions and may be given to outbursts of anger, according to Michelle Johnson-Motoyama, a professor of social work at Ohio State University.

“I’m sure for that child there is a sense of tremendous injustice about what happened,” Johnson-Motoyama said.

Especially right after the shooting, Samuel had panic attacks, Antonio said, and he’d break out in a sweat. Therapists told them that was normal. But the parents also kept him off his phone for a while, as there was so much about the shooting on the news and online.

Abigail, who works at a car dealership with Antonio, is anxious about seeing her son change, his suffering and sadness. She is also concerned for her three daughters, a 16-year-old and 13-year-old twins. Her father, Victor Salas, who was with Samuel at the parade, was also reeling in its aftermath.

“I’m crying and crying and crying about what happened,” Salas said in Spanish four days after the parade. “Because it was chaos. It doesn’t mean that families don’t love their family, but everyone took off to save their own lives. I saved my grandchildren’s lives, but what happens to the rest of the people? We’re not prepared.”

On the good side, Samuel felt very supported by the community in Kansas City, Kansas. Many people from his school stopped by in the first few days to visit, including friends and even a former bus driver, who was in tears. He has a “room full of candy,” Abigail said, mostly Skittles, his favorite.

An autographed football from Kansas City Chiefs quarterback Patrick Mahomes arrived on his birthday. It made him cry, his father said, which happens pretty often.

“There are good and bad days, days that are more normal and easier, and then there are days where the family has to be a little bit more aware and supportive,” Abigail said in Spanish. “He’s always been outgoing and talkative like his mom, but that has changed since the parade.”

Fourth of July a Weeklong Trigger

The Fourth of July was particularly harrowing for many of the young survivors and their families. Should they buy fireworks? Will they want to celebrate? And why do all the firecrackers going off in the neighborhood sound like gunshots?

Fourteen-year-old Gabriella needed help from her stepfather, Jason Barton, to light her fireworks this year, something she is ordinarily enthusiastic about doing herself. At the parade, like many people, the Barton family initially mistook the sound of gunfire for fireworks.

And Erika Nelson, a single mom in Belton, Missouri, feared even bringing up the holiday with Mireya, who has always loved Independence Day. Eventually Mireya said she didn’t want any big fireworks this year and wanted only her mom to set theirs off.

“Just any little trigger — I mean, it could be a light crackle — and she just clenched,” Erika Nelson said.

Patty Davis, a program manager for trauma-informed care at Children’s Mercy hospital in Kansas City, said even her clients who were at the parade but were not injured still flinch at the sounds of sirens or other loud noises. It’s a powerful response to gun violence, she said.

“So not just an accidental trauma,” she said, “but a trauma that was perpetrated for violent purposes, which can cause an increased level of anxiety for persons around that to wonder if it’s going to happen again. And how safe are they?”

Reliving Getting Shot

Random sounds, bright lights, and crowds can catch the kids and their parents off guard. In June, Mireya Nelson was waiting for her older sister after a dance recital, hoping to see a boy she knew give a flower to a girl everyone said he had a crush on. Her mom wanted to go, but Mireya shushed her.

“Then all of a sudden, there was a loud boom,” Erika said. “She dropped low to the ground. And then she jumped back up. She goes, ‘Oh my God, I was getting shot again!’”

Mireya said it so loudly people were staring, so it was Erika’s turn to shush her and try to soothe her.

“I was like, ‘Mireya, it’s OK. You’re all right. They dropped a table. They’re just moving stuff out. It was an accident,’” Erika said.

It took a few minutes for the shock to wear off and Mireya later giggled about it, but Erika is always on watch.

Her daughter’s early sadness — she watched movies for hours, crying throughout — has since changed to a cheekiness. Half a year later, Mireya will joke about the shooting, which tears her mother up. But maybe that is part of the healing process, Erika says.

Before the Fourth of July, Mireya went to Worlds of Fun, a large amusement park, and had a good time. She felt OK because there were security guards everywhere. She also enjoyed a visit to the local FBI office with a friend who was with her the day of the shooting. But when someone suggested a trip to the ballet, Mireya squashed it quickly — it’s near Union Station, the site of the shooting. She doesn’t want to go downtown anymore.

Erika said the doctor appointments and financial strains have been a lot to juggle and that her biggest frustration as a parent is that she’s not able to fix things for her daughter.

“They have to go their own way, their own process of healing. I can’t shake her, like, ‘Get back to yourself,’” Erika said. “It could take months, years. Who knows? It could be the rest of her life. But I hope that she can overcome a little bit of it.”

Goose Bumps in the Sweltering Heat

James Lemons noticed a change in his 5-year-old daughter, Kensley, who was on his shoulders when he was shot at the parade. Before the shooting Kensley was outgoing and engaged, James said, but now she is withdrawn, like she has closed off her bubble and disconnected from people.

Large crowds and police officers remind Kensley of the parade. Both were present at a high school graduation the family attended this summer, prompting Kensley to ask repeatedly to leave. James took her to an empty football field, where, he said, she broke out in goose bumps and complained of being cold despite the sweltering heat.

Bedtime is a particular problem for the Lemons family. Kensley has been sleeping with her parents. Another child, 10-year-old Jaxson, has had bad dreams. One night, he dreamt that the shooter was coming near his dad and he tripped him, said Brandie Lemons, Jaxson’s stepmom.

Younger children like Kensley exposed to gun violence are more likely to develop post-traumatic stress disorder than older children, according to Ohio State’s Johnson-Motoyama.

Davis, of Children’s Mercy in Kansas City, said children whose brains are not fully developed can have a hard time sleeping and understanding that they are safe in their homes at night.

James got the family a new puppy — an American bulldog that already weighs 32 pounds — to help them feel protected.

“I looked up the pedigree,” he said, “They’re real protective. They’re real loving.”

Searching for an Outlet to Let Off Steam

Gabriella took up boxing after the shooting. Her mother, Bridget, said it restored some of her confidence and control that dimmed after the parade.

“I like beating people up — not in a mean way, I swear,” Gabriella said in April as she molded a mouthguard to her teeth before leaving for training.

She has since stopped boxing, however, so the money can instead go toward a trip to Puerto Rico with her Spanish class. They’re paying $153 a month for 21 months to cover the trip. Boxing classes were $60 a month.

Bridget thought boxing was a good outlet for leftover anger, but by the end of July Gabriella wasn’t sure if she still had the drive to fight back that way.

“The past is the past but we’re still gonna all, like, go through stuff. Does that make sense?” Gabriella asked.

“You’re mostly OK but you still have triggers. Is that what you mean?” her mother asked.

“Yeah,” she replied.

After the shooting, Mireya Nelson tried online classes, which didn’t work well. The first few days of summer school, Mireya had a panic attack every day in the car and her mother took her home.

Mireya wants to return to high school this fall, and Erika is wary.

“You know, if I do go back to school, there’s a chance at school of being shot, because most schools nowadays get shot up,” Erika recalled her daughter saying. “And I’m like, ‘Well, we can’t think like that. You never know what’s gonna happen.’”

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Hundreds of Mississippians die every year from opioid overdoses, an epidemic that has claimed the lives of tens of thousands more nationwide. In a series of historic settlement agreements, pharmaceutical companies agreed to pay about $50 billion over 18 years for their role in fueling the crisis — and Mississippi has signed on to be part of the settlements.

How the state and local governments choose to use this cash windfall in the years ahead will significantly shape Mississippi’s policies toward addiction treatment and prevention — as well as health care in general.

We’ve broken down the key things you need to know about the settlements.

Where Is the Money Going?

Mississippi has begun to receive portions of the approximately $203 million it expects from national settlements with three pharmaceutical distributors and one opioid manufacturer. The state also expects an estimated additional $167 million from national opioid settlements with other companies.

The money is split into three buckets: 15% goes to the state government; another 15% to counties and cities, which will be distributed based on population and how heavily the crisis has affected those communities; and the remaining 70% to an opioid abatement fund that will be controlled by the state legislature.

Policymakers and local officials are starting to develop plans for how to use these dollars. The opioid agreements set out guidelines for spending, including nine core opioid abatement strategies — which consist of activities like broadening access to naloxone and medications for opioid use disorder, as well as investing in prevention efforts.

Who Is Controlling the Money in Mississippi?

Both the state government’s share and the abatement fund will be under the direct control of the state legislature, which will ultimately decide how that money gets spent. The legislature, through an appropriations act, has set up a special account for all of the funds it controls.

“We were encouraged by the fact that they set [a fund] up, because that’s the first necessary step,” said Michelle Williams, chief of staff for state Attorney General Lynn Fitch. Advocates across the nation have recommended that states create special funds for the dollars they receive before making any decisions about how to use them.

To date, though, Mississippi’s state and abatement shares have been tapped only to cover attorneys fees from the opioid litigations, according to Williams. Across the country, many jurisdictions have been slow to spend their funds.

The attorney general’s office, which helped negotiate the settlements on behalf of Mississippi, has already signaled some priorities for the money. One is to establish a Center for Addiction Medicine at the University of Mississippi Medical Center — an idea mentioned in an agreement the office reached with cities and counties. The creation and operation of this center would be supported by the abatement fund — the largest pot of settlement dollars. Lawmakers have not widely discussed the proposal, however, and confusion surrounds plan specifics.

According to Williams, the concept arose from conversations with UMMC and members of the legislature. The attorney general’s office provided a document that explains why this new center should receive millions in settlement funds.

That’s where any cohesion in Mississippi’s planning seems to begin and end. UMMC, for instance, declined to confirm any communication with the attorney general’s office about the idea of a new center or answer any questions about the proposal. The system already operates a center that focuses on addiction research and treatment.

According to Leah Smith, deputy chief of staff for Lt. Gov. Delbert Hosemann, his office intends to meet with Mississippi state leaders and advocates “to establish a plan to be adopted by the Legislature when it next meets in January,” although the timeline is uncertain.

The Mississippi Association of Supervisors, whose purpose is to “support and educate county officials and others on topics and issues important to county governments,” reported not having developed a plan to support their members as they prepare to spend the money. By contrast, the Arkansas Municipal League and the Association of Arkansas Counties has created a joint fund that helps local governments there coordinate opioid abatement activities.

Mike Moore — the former Mississippi attorney general who spearheaded the landmark national tobacco master settlement agreement and has been involved in opioid litigation across several states — has concerns about the disjointed approach in Mississippi.

“If you're just going to send checks out to every little city and county, I don't know what encourages collaboration there,” he said.

How Has the Money Been Spent So Far?

Every eligible Mississippi county will receive a portion of the approximately $54 million set aside for localities. Choctaw, Montgomery, Sharkey, Webster, and Wilkinson counties were ineligible.

Dozens of cities and towns throughout the state will also be receiving funds, though the amount varies drastically. Gulfport is expected to receive nearly $4.5 million through 2038, the most of any locality in the state. During that same time, Diamondhead will receive about $92.

These payments may increase as the state finalizes settlements with additional companies.

Gulfport is the state’s second-largest city, with a population of roughly 73,000. The coastal city has received at least $430,000 so far. Decisions about how the money is spent will be made by the City Council.

Gulfport councilmember Ella Holmes-Hines would like to see the money go to community organizations that serve people struggling with addiction and law enforcement officer training.

“The problem is how and why you got the money, so therefore you have to address the problem,” she said.

So far the city has used only $4,000, to fund a local Thanksgiving and Christmas meal-delivery program last year.

Few counties reported having concrete plans.

Harrison County Board of Supervisors President Marlin Ladner, for instance, said spending decisions may be made this budget season. Harrison County, where Gulfport is located, led the state in suspected overdose deaths and naloxone administrations in 2022. Similarly, Jackson County — which had the state’s highest number of suspected overdose deaths per 100,000 residents in 2023 — has yet to budget the funds, according to the County Administrator’s office.

At the other end of the state, the DeSoto County Board of Supervisors has committed the $116,000 it has received so far to fund a crisis center.

“It’s for immediate crisis — for if someone has an addiction problem or mental illness, or needs to come for counseling,” said Lee Caldwell, Board of Supervisors president. “DeSoto County likes to be first, but we don’t want to be first in opioid deaths. We don’t want to be first in the challenges that it brings to families because of addiction.”

What Are the Advocates Saying?

As the decision-makers wrestle with their next steps, people who see Mississippi’s opioid crisis firsthand say the need continues to be very real.

“My friends are dying in the streets. We have overdoses every day,” said Jason McCarty, executive director of the Mississippi Harm Reduction Initiative, a community organization that supports people struggling with and recovering from opioid addictions.

Part of the challenge he and other advocates face is keeping the state’s problem in focus.

Provisional data from The Mississippi Opioid and Heroin Data Collaborative indicates that at least 1,257 people died of suspected opioid-related causes from 2020 to 2023 — an average of 314 people a year. That’s lower than the death toll in many other places, he said, but not reflective of what’s happening.

“Mississippi doesn’t look like it actually has a problem compared to other states. But I know that we do,” McCarty said.

Some parts of the state have been hit harder than others. The coastal region stands out, in recent years representing an outsize portion of Mississippi’s suspected overdose deaths, emergency medical services naloxone administrations, and drug-related arrests.

Grassroots organizations, McCarty said, should be first in line to receive settlement resources. The harm reduction initiative distributes naloxone, operates a recovery community center in Jackson, and does educational programming with Mississippi youth.

But in his experience, that’s not how the distribution of resources works.

“I feel like money keeps going to these big organizations who are really not doing grassroots work,” McCarty said.

McCarty and other advocates said it’s difficult to find out what’s going on with settlement funds. He said no one has contacted his organization for input on how the state should spend the money.

Jody Couch founded Inside Out Outreach, which works to provide faith-based support for the homeless population in Gulfport, many of whom have addictions. She believes the money could be best spent addressing the lack of housing and other resources in her area.

“That funding could help with the cost of getting treatment and for it to be local,” she said.

Couch has been contacted for input by at least one local official in Gulfport as the city prepares to decide how to spend its share of the opioid settlement funds.

She believes what the opioid settlement funds need most is oversight to ensure accountability about how the money is spent in her community.

But the state has not implemented public reporting requirements. Localities do not have to say how much money they have received or how it has been spent. There are also no requirements dictating how localities must use the money — they could use it to fill potholes.

Similar concerns about misuse are playing out nationally, but at the same time, there’s hope that the money can do good.

“History will be written. We'll find out how well they do,” said Moore, the former Mississippi attorney general. “But my gut tells me that they're going to be pretty serious about the money being spent in the right way.”

KFF Health News senior correspondent Aneri Pattani contributed to this report.

This report was produced through a collaboration between KFF Health News and Mississippi Today.

Mississippi Today, winner of the 2023 Pulitzer Prize for Local Reporting, has exposed corruption, provided critical information in times of crisis, and broken down complicated issues like health care and criminal justice so that everyday people can understand how policy impacts their lives. Founded in 2016 as the state’s flagship nonprofit, nonpartisan newsroom, Mississippi Today’s roots in Capitol coverage have grown to encompass a myriad of beats beyond politics and policy, including education, health, justice, environment, and equity.

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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Hace unos años, los organizadores de uno de los mejores programas de ejercicios para personas con la enfermedad de Parkinson en Estados Unidos se dieron cuenta de que tenían un problema: la mayoría de los participantes eran blancos no hispanos.

“Siempre nos preguntamos por los que no están aquí, y por qué no están participando”, dijo David Leventhal, director del programa Dance for PD, que trabaja con el Grupo de Danza Mark Morris en la ciudad de Nueva York.

Entonces, Leventhal y su equipo pusieron manos a la obra: contrataron más instructores que hablaban español o mandarín y tradujeron los materiales publicitarios. Esto aumentó significativamente el número de participantes de comunidades hispanas (que pueden ser de cualquier raza), y chinas.

Pero los esfuerzos por captar participantes afroamericanos no han sido tan eficaces, apuntó Leventhal.

Se considera que el ejercicio es fundamental para el tratamiento del Parkinson. Numerosos estudios afirman que la actividad física es efectiva para aliviar los síntomas de la enfermedad y para mejorar la movilidad, la flexibilidad y el equilibrio.

Sin embargo, las personas que dirigen los programas de ejercicios para el Parkinson en un puñado de ciudades a lo largo del país confirman que hay grandes dificultades para sumar a sus actividades a personas de raza negra.

“En el Parkinson, el movimiento es terapéutico, es medicina. Así que no conseguir que esas comunidades se involucren en los programas de ejercicios es como negarles la medicación. “Si esto fuera una píldora, sería un escándalo”.

Cuando se presenta el mal de Parkinson, las neuronas que producen dopamina se destruyen lentamente. Un pequeño estudio realizado por investigadores de la Universidad de Yale demostró que, si los pacientes hacen seis meses de ejercicios, las neuronas productoras de dopamina crecen más sanas.

A la vez, una investigación publicada por una revista médica británica este año alentó un “cambio de paradigma” en el que la actividad física sería “recetada individualmente como medicina” a los pacientes en una etapa temprana de la enfermedad.

Por eso, personas como Eric Johnson, fundador y director general de Movement Revolution, se sienten frustradas. Johnson dijo que su iniciativa en el área de Chicago ofrecía un programa gratuito de seis meses de ejercicios para pacientes con Parkinson e intensificó su promoción en la comunidad negra, pero obtuvo poca respuesta. “Seré sincero, fue un desafío”, dijo.

Un gran obstáculo es que muchas personas negras ni siquiera saben que tienen la enfermedad. Los factores de riesgo biológicos y genéticos han sido poco estudiados en las personas de ascendencia africana. Además, investigaciones recientes han identificado un nuevo factor de riesgo de Parkinson en esta población.

Estudios muestran que las personas de raza negra tienen menos probabilidades de que les diagnostiquen Parkinson. Algunos apuntan a la parcialidad de los médicos. Por ejemplo, un artículo publicado en julio del año pasado en Nature concluyó que el prejuicio puede influir en la evaluación de pacientes con disminución de la expresividad facial, un síntoma común del Parkinson en el que los músculos faciales se endurecen, lo que dificulta sonreír, levantar las cejas y expresar sentimientos.

Cuando una persona blanca no hispana se presenta en el consultorio del médico con estos síntomas, es probable que el profesional los reconozca como signos de Parkinson, dijo Bernard Coley, defensor de los enfermos de Parkinson, en particular de aquellos de bajos ingresos.

Pero cuando una persona negra presenta los mismos síntomas, el médico podría interpretar sus comportamientos como expresión de “desconexión” o “enojo”, afirmó Coley, que integra la sección californiana de la Fundación contra el Parkinson.

Alrededor de 1 de cada 5 adultos negros asegura que, en el lapso de los últimos tres años, un proveedor de salud los ha tratado de forma injusta o irrespetuosamente debido a su raza u origen étnico, en comparación con el 3% de los adultos blancos no hispanos, reveló una encuesta de KFF del año pasado.

La encuesta también mostró que 6 de cada 10 adultos negros afirman que se preparan para recibir eventuales ofensas y que sienten que deben tener cuidado con su aspecto durante las citas médicas, algo que les pasa solo a 1 de cada 3 adultos blancos no hispanos.

Coley dijo que los prejuicios pueden llevar a retrasar el diagnóstico del Parkinson o a no hacerlo. Y luego, una vez que la dolencia ha sido diagnosticada, es posible que un paciente negro se muestre reacio a participar de un programa de ejercicios por temor a sufrir represalias en el trabajo.

“No quieres parecer enfermo o conflictivo”, dijo Coley, “porque [tu empleador] usará cualquier excusa para deshacerse de ti”.

El orgullo y la privacidad son otros factores, dijo Wendy Lewis, directora general del Parkinson Council de Philadelphia. “Las familias de color no comparten ni cuentan sus asuntos”, dijo. “No confían sus historias a nadie”.

Una forma de generar confianza y aumentar la participación en los programas de ejercicios para el Parkinson es que sean personas negras quienes lideren la capacitación y el registro, dijo Tammyjo Best, enfermera coordinadora de la Clínica de Atención Integral de la Enfermedad de Parkinson en la Universidad de Emory, en Atlanta.

Como persona negra que recluta pacientes para ensayos clínicos, Best dijo que a menudo logra superar la desconfianza: “Cuando me miran, se ven a sí mismos”, dijo.

Tras el escaso éxito de sus intentos de reclutar pacientes negros con Parkinson en su programa de ejercicios en Chicago, Johnson concluyó que el hecho de no ser de la misma raza es un “factor importante”.

Leventhal, que dirige el programa de ejercicios para Parkinson en Nueva York, ha llegado a la misma conclusión. Su organización, el Grupo de Danza Mark Morris, está recaudando fondos para proporcionar microdonaciones a grupos en comunidades desatendidas, con el objetivo de que inicien programas de baile para el Parkinson. Así esperan que “puedan tener el control y tomar las decisiones financieras ellos mismos”.

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The night before her chemotherapy, Herlinda Sanchez sets out her clothes and checks that she has everything she needs: a blanket, medications, an iPad and chargers, a small Bible and rosary, fuzzy socks, and snacks for the road.

After the 36-year-old was diagnosed with stage 3 breast cancer in December, she learned that there weren’t any cancer services in her community of Del Rio, a town of 35,000 near the Texas-Mexico border.

To get treatment, she and her husband, Manuel, must drive nearly three hours east to San Antonio. So they set an alarm for 4 a.m., which allows for just enough time to roll out of bed, brush their teeth, and begin the long drive navigating dark roads while watching for deer.

About an hour before they arrive at the cancer clinic, the couple pulls over to quickly eat fast food in the car. The break gives Herlinda time to apply ointment on the port where the needle for her chemotherapy will be inserted.

“It numbs the area, so when I get to the infusion room the needle won’t hurt,” she said.

For rural patients, getting cancer treatment close to home has always been difficult. But in recent years, chemotherapy deserts have expanded across the United States, with 382 rural hospitals halting services from 2014 to 2022, according to a report published this year by Chartis, a health analytics and consulting firm.

Texas led that list, with 57 rural hospitals — nearly half of those statewide that had offered chemotherapy — cutting the service by 2022, according to the analysis. Rural hospitals in states like Texas, which hasn’t expanded Medicaid, have been more likely to close, according to data from the Cecil G. Sheps Center for Health Services Research.

To keep the doors open, financially strapped facilities in small communities nationwide continue to shed basic health care services, like obstetrics and chemotherapy, said Michael Topchik, executive director of the Chartis Center for Rural Health.

“The data are staggering,” Topchik said. “Can you imagine feeling that sick, and having to drive an hour in each direction, or maybe more each direction, several times a week?”

Loss of chemotherapy services can signal other gaps in cancer care, such as a shortage of local specialty physicians and nurses, which is bad news for patients, said Marquita Lewis-Thames, an assistant professor at Northwestern University in Chicago whose research covers rural cancer care.

Rural patients are less likely to survive at least five years after a cancer diagnosis compared with their urban counterparts, concluded a study co-authored by Lewis-Thames and published in JAMA Network Open in 2022. While the rural-urban survival gap narrowed over the nearly 40 years researchers studied, the disparity persisted across most racial and ethnic groups, with only a few exceptions, she said.

Many cancer drugs are now given orally and can be taken at home, but some treatments for breast, colon, and other common cancers must still be administered intravenously inside a medical facility. Even distances of an hour or two each way can strain patients who already may be coping with nausea, diarrhea, and other side effects, physicians and patient advocates said.

“It’s pretty uncomfortable for some of these patients who may have bone metastases or have significant muscular pain and have to sit in the car that long and hit road bumps,” said Shivum Agarwal, a family physician who practices in rural communities an hour west of Fort Worth, Texas.

Plus, travel can cost much more than filling the gas tank.

“Usually it requires an able-bodied family member taking off a whole day or at least half a day from work,” Agarwal said. “So, there’s a big economic cost for the family.”

In this sense, the Sanchez family is fortunate. Herlinda’s mother drives four hours from Abilene to Del Rio to watch the couple’s youngest children, their 2-year-old twins.

Cancer infusions can last as long as eight hours on top of the travel time, causing significant financial and logistical challenges, said Erin Ercoline, executive director of the San Antonio-based ThriveWell Cancer Foundation. The nonprofit provides adult patients with financial assistance, including for gaps in insurance and transportation-related costs. It has helped cover gasoline for Sanchez, who received her final round of chemotherapy in late June. The financial assistance will also pay for her hotel when she travels for breast surgery this month.

Not all rural hospitals are ending chemotherapy. Childress Regional Medical Center, a 39-bed hospital in West Texas, is constructing a 6,000-square-foot center for patients who need infusions for cancer and other diagnoses, including multiple sclerosis and rheumatology.

The infusion area, which started with two chairs in 2013 and now has four, will grow to 10 chairs and have more patient privacy when it opens next year. The next-nearest infusion center in this sprawling region is an hour or more away, which discourages some patients from seeking care, said Childress’ CEO, Holly Holcomb.

“We’ve had a handful of patients say, ‘If you can’t do it here, I’m not doing it,’” Holcomb said. She credits the federal 340B drug discount program for enabling the remote hospital to provide infusion drugs.

Hospitals that qualify for 340B can buy outpatient drugs at steep discounts. The program provides “a huge kickstand for rural hospitals,” said Topchik, of Chartis Center. Hospitals can use the savings to buoy or expand services provided to the community, he said.

But some patients are not daunted by long drives and travel costs.

“I’m from the country, so small is better — it’s just more personable,” said Dennis Woodward, 69, who lives in Woodson, Texas. He has a type of non-Hodgkin lymphoma and chooses to make a two-hour drive to Childress. He had first visited an oncology clinic in Abilene about an hour away. The clinicians were nice, but “I felt like a number,” he said.

After his first appointment at Childress this year, his oncologist, Fred Hardwicke, walked him over to meet the nurses who would administer the medicine, Woodward recalled.

Most Fridays during Herlinda Sanchez’s chemotherapy, Manuel would nap in the car. But during her final treatment in June, he stayed nearby, counting down the hours.

Several family members joined Herlinda when she rang the bell later that afternoon to signal the end of her treatment.

“I don’t want to be in San Antonio no more,” said Herlinda, a mother of four who does administrative work at Laughlin Air Force Base near Del Rio. “I’m looking forward to the break.”

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Social media’s effects on the mental health of young people are not well understood. That hasn’t stopped Congress, state legislatures, and the U.S. surgeon general from moving ahead with age bans and warning labels for YouTube, TikTok, and Instagram.

But the emphasis on fears about social media may cause policymakers to miss the mental health benefits it provides teenagers, say researchers, pediatricians, and the National Academies of Sciences, Engineering, and Medicine.

In June, Surgeon General Vivek Murthy, the nation’s top doctor, called for warning labels on social media platforms. The Senate approved the bipartisan Kids Online Safety Act and a companion bill, the Children and Teens’ Online Privacy Protection Act, on July 30. And at least 30 states have pending legislation relating to children and social media — from age bans and parental consent requirements to new digital and media literacy courses for K-12 students.

Most research suggests that some features of social media can be harmful: Algorithmically driven content can distort reality and spread misinformation; incessant notifications distract attention and disrupt sleep; and the anonymity that sites offer can embolden cyberbullies.

But social media can also be helpful for some young people, said Linda Charmaraman, a research scientist and director of the Youth, Media & Wellbeing Research Lab at Wellesley Centers for Women.

For children of color and LGBTQ+ young people — and others who may not see themselves represented broadly in society — social media can reduce isolation, according to Charmaraman’s research, which was published in the Handbook of Adolescent Digital Media Use and Mental Health. Age bans, she said, could disproportionately affect these marginalized groups, who also spend more time on the platforms.

“You think at first, ‘That’s terrible. We need to get them off it,’” she said. “But when you find out why they’re doing it, it’s because it helps bring them a sense of identity affirmation when there’s something lacking in real life.”

Arianne McCullough, 17, said she uses Instagram to connect with Black students like herself at Willamette University, where about 2% of students are Black.

“I know how isolating it can be feeling like you’re the only Black person, or any minority, in one space,” said McCullough, a freshman from Sacramento, California. “So, having someone I can text real quick and just say, ‘Let’s go hang out,’ is important.”

After about a month at Willamette, which is in Salem, Oregon, McCullough assembled a social network with other Black students. “We’re all in a little group chat,” she said. “We talk and make plans.”

Social media hasn’t always been this useful for McCullough. After California schools closed during the pandemic, McCullough said, she stopped competing in soccer and track. She gained weight, she said, and her social media feed was constantly promoting at-home workouts and fasting diets.

“That’s where the body comparisons came in,” McCullough said, noting that she felt more irritable, distracted, and sad. “I was comparing myself to other people and things that I wasn’t self-conscious of before.”

When her mother tried to take away the smartphone, McCullough responded with an emotional outburst. “It was definitely addictive,” said her mother, Rayvn McCullough, 38, of Sacramento.

Arianne said she eventually felt happier and more like herself once she cut back on her use of social media.

But the fear of missing out eventually crept back in, Arianne said. “I missed seeing what my friends were doing and having easy, fast communication with them.”

For a decade before the covid-19 pandemic triggered what the American Academy of Pediatrics and other medical groups declared “a national emergency in child and adolescent mental health,” greater numbers of young people had been struggling with their mental health.

More young people were reporting feelings of hopelessness and sadness, as well as suicidal thoughts and behavior, according to behavioral surveys of students in grades nine through 12 conducted by the Centers for Disease Control and Prevention.

The greater use of immersive social media — like the never-ending scroll of videos on YouTube, TikTok, and Instagram — has been blamed for contributing to the crisis. But a committee of the national academies found that the relationship between social media and youth mental health is complex, with potential benefits as well as harms. Evidence of social media’s effect on child well-being remains limited, the committee reported this year, while calling on the National Institutes of Health and other research groups to prioritize funding such studies.

In its report, the committee cited legislation in Utah last year that places age and time limits on young people’s use of social media and warned that the policy could backfire.

“The legislators’ intent to protect time for sleep and schoolwork and to prevent at least some compulsive use could just as easily have unintended consequences, perhaps isolating young people from their support systems when they need them,” the report said.

Some states have considered policies that echo the national academies’ recommendations. For instance, Virginia and Maryland have adopted legislation that prohibits social media companies from selling or disclosing children’s personal data and requires platforms to default to privacy settings. Other states, including Colorado, Georgia, and West Virginia, have created curricula about the mental health effects of using social media for students in public schools, which the national academies also recommended.

The Kids Online Safety Act, which is now before the House of Representatives, would require parental consent for social media users younger than 13 and impose on companies a “duty of care” to protect users younger than 17 from harm, including anxiety, depression, and suicidal behavior. The second bill, the Children and Teens’ Online Privacy Protection Act, would ban platforms from targeting ads toward minors and collecting personal data on young people.

Attorneys general in California, Louisiana, Minnesota, and dozens of other states have filed lawsuits in federal and state courts alleging that Meta, the parent company of Facebook and Instagram, misled the public about the dangers of social media for young people and ignored the potential damage to their mental health.

Most social media companies require users to be at least 13, and the sites often include safety features, like blocking adults from messaging minors and defaulting minors’ accounts to privacy settings.

Despite existing policies, the Department of Justice says some social media companies don’t follow their own rules. On Aug. 2, it sued the parent company of TikTok for allegedly violating child privacy laws, saying the company knowingly let children younger than 13 on the platform, and collected data on their use.

Surveys show that age restrictions and parental consent requirements have popular support among adults.

NetChoice, an industry group whose members include Meta and Alphabet, which owns Google and YouTube, has filed lawsuits against at least eight states, seeking to stop or overturn laws that impose age limits, verification requirements, and other policies aimed at protecting children.

Much of social media’s effect can depend on the content children consume and the features that keep them engaged with a platform, said Jenny Radesky, a physician and a co-director of the American Academy of Pediatrics’ Center of Excellence on Social Media and Youth Mental Health.

Age bans, parental consent requirements, and other proposals may be well-meaning, she said, but they do not address what she considers to be “the real mechanism of harm”: business models that aim to keep young people posting, scrolling, and purchasing.

“We’ve kind of created this system that’s not well designed to promote youth mental health,” Radesky said. “It’s designed to make lots of money for these platforms.”

Chaseedaw Giles, KFF Health News’ digital strategy & audience engagement editor, contributed to this report.

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A few months ago, I visited Jackson, Miss., to attend African American Visit Day at the University of Mississippi’s School of Medicine. High school and college students from across the state spent time that Saturday morning with Black medical students and administrators, finding out what they needed to do to become a doctor.

The annual event is one way the medical school is trying to recruit more Black students in a state where almost 4 in 10 people, but only 1 in 10 doctors, are Black.

The University of Mississippi isn’t alone. Medical schools around the country are trying to enroll more Black, Hispanic and Native American students, all of whom remain underrepresented in the field of medicine. Research has shown that patients of color prefer seeing doctors of their own race — and some studies have shown health outcomes for Black patients are better when they see Black doctors.

But a recent swell of Republican opposition threatens to upend those efforts, school administrators say, and could exacerbate deep health disparities experienced by people of color.

Several states, including Alabama, Florida and Texas, have restricted diversity, equity and inclusion efforts in higher education. Republican lawmakers in Mississippi have so far failed to enact such a law, though two were introduced during the most recent legislative session. Both died in committee.

“I don’t expect this movement of anti-DEI legislation to slow down or stop at all,” said Anton Gunn, a health-care consultant and former head of the Office of External Affairs at the U.S. Department of Health and Human Services.

Angela Burks Hill, a Mississippi state senator and former science teacher who introduced one of the bills, said she thinks focusing on race contributes to division. “Can’t we just be happy with more highly qualified doctors no matter their skin color? I thought a color-blind society was the goal,” she said. “The millions spent on DEI salaries and programs should be reallocated to something that benefits all students.”

Demondes Haynes, associate dean of medical school admissions at the University of Mississippi Medical Center, graduated from the medical school in 1999 as one of only four Black students in his class. Today, he estimated, more than 80 students across the four-year program are Black.

“We absolutely are not saying every Black patient has to have a Black doctor,” Haynes said. But because the patient population in Mississippi is diverse, “they should at least have the right to say, ‘This is what I want,’” he added.

On African American Visit Day, I spoke with several medical school students at the University of Mississippi who said they wouldn’t have enrolled if not for one of the university’s DEI outreach efforts.

Jerrian Reedy, an African American student from Hattiesburg, Miss., who recently finished his first year of medical school at the University of Mississippi, said when he was applying, the fact that several of the school’s top administrators were Black made him feel the institution was committed to diversity.

“It just made me think, ‘Hey, well, you — we — are welcome here,’” Reedy said.

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From his perch in the Trump administration’s Department of Health and Human Services, Roger Severino made a controversial name for himself, working to shield health workers who declined to perform medical procedures including abortion on religious grounds.

After President Donald Trump left office, Severino helped the conservative Heritage Foundation develop a plan to expand that conservative stamp to the broader department, recasting HHS with a focus on traditional marriage and family.

The vision is outlined in the Project 2025 “Mandate for Leadership,” a blueprint by the foundation and allied groups intended to guide the next presidential administration. It has emerged as a political flash point, as Democrats portray the 900-page document as promoting an authoritarian power grab by extreme conservatives.

Severino, the lead architect of the project’s section on HHS, has won praise from conservatives and criticism from LGBTQ+ and other liberal advocacy groups who say he poses a threat to reproductive rights and gender-affirming care.

His proposals smack of some of the most heated culture war conflicts shaping the election, from gay rights to gender identity to contraception. They would likely find support under a conservative administration.

Under Severino’s vision for HHS, federal approval of one commonly used abortion drug, mifepristone, could be revisited and potentially withdrawn. Health agencies would promote “fertility awareness” as an “unsurpassed” method of contraception. Medicaid, the public health insurance program that covers more than 75 million low-income and disabled people, could be converted into block grants that Democrats say would result in far lower funding and enrollment.

HHS itself would be known as the Department of Life, underscoring a new focus on opposing abortion.

Severino declined to comment extensively on Project 2025, but he pushed back in an interview on assertions that it would ban access to medication abortion.

“When the Biden-Harris administration says [the document] would ban all chemical abortion nationally, it’s a lie, plain and simple,” he said.

Trump, again the GOP’s presidential nominee, has taken increasingly aggressive steps to distance himself from Project 2025 as it has become central to his opponents’ attacks. Heritage on July 30 said that Paul Dans, who directed the initiative, would step down from his role. The same day, Trump’s campaign managers, Susie Wiles and Chris LaCivita, denounced the document.

“Project 2025 had nothing to do with the campaign, did not speak for the campaign, and should not be associated with the campaign or the President in any way,” Wiles and LaCivita said in a statement.

But the campaign’s message is undermined by the document’s authorship; its contributors include a number of high-ranking officials from Trump’s first administration, including former White House adviser Peter Navarro; Christopher Miller, whose positions included acting secretary of defense; and Trump’s secretary of Housing and Urban Development, Ben Carson.

Project 2025’s passages on abortion, in particular, depart significantly from what Trump has said about the issue on the campaign trail. He has said he wants abortion policy made in states, not at the federal level, and that he wouldn’t support a national ban or taking mifepristone off the market. He refashioned the official GOP platform to make scant mention of abortion, recognizing the political peril the issue posed for his campaign.

Support for abortion access is growing. Sixty-one percent of adults want their state to allow legal abortion for any reason, according to a poll conducted in June by The Associated Press and the University of Chicago’s NORC, which conducts social research.

The Heritage Foundation’s policy proposals, published roughly every four years since the 1980s, have had considerable sway on GOP presidents. Former presidents Ronald Reagan and Trump each adopted about 60% or more of the recommendations produced in earlier Heritage guides, the group says.

Severino was a trial attorney for seven years in the U.S. Department of Justice’s Civil Rights Division under former presidents George W. Bush and Barack Obama. He joined Heritage in 2015 and garnered acclaim from conservatives in part because of articles he published while he was there.

In one, for example, he said a proposal by Obama to include gender identity in Affordable Care Act provisions prohibiting discrimination would penalize medical professionals and health care organizations that, as a matter of faith, believe “maleness and femaleness are biological realities” to be “affirmed” rather than “treated as diseases.”

He was tapped to run the HHS Office for Civil Rights in 2017.

There, he created a new Division of Conscience and Religious Freedom because, he said, protections for people with deeply held religious beliefs had been underenforced.

The proposals for HHS laid out in Project 2025 have alarmed LGBTQ+ advocacy groups as well as some researchers.

“It could promote stigma and discrimination,” said Lindsey Dawson, director of LGBTQ Health Policy at KFF, a health information nonprofit that includes KFF Health News.

President Joe Biden and the Democratic Party’s new presumptive presidential nominee, Vice President Kamala Harris, have repeatedly urged voters to read the document themselves.

In one of her first speeches after taking over the top spot on the Democratic ticket, Harris said Project 2025 would “treat health care as only a privilege for the wealthy instead of what we all know it should be, which is a right for every American.”

Conservatives say Democrats are lying about what Project 2025’s proposals would do and are incorrectly attributing the ideas to Trump for political gain.

Spokespeople for the Trump and Harris campaigns didn’t respond to requests for comment.

The blueprint’s foreword espouses what it calls an anti-“woke” mentality, proposing to delete from every federal regulation words such as diversity, equity, inclusion, “and any other term used to deprive Americans of their First Amendment rights.”

HHS would revisit a rule that prohibits discrimination in health programs and extends those protections to people based on their sexual orientation and gender identity. The document says that definition “created special privileges for new classes of people, defined in ways that are highly ideological and unscientific,” and should be reversed.

The Centers for Disease Control and Prevention would cease collecting data on gender identity because, the Project 2025 report says, it “legitimizes the unscientific notion that men can become women (and vice versa),” and health agencies would study the “negative effects of cross-sex interventions” such as puberty blockers.

“Families comprised of a married mother, father, and their children are the foundation of a well-ordered nation and healthy society,” according to the document.

The road map would roll back years of hard-fought gains for people who are LGBTQ+, their advocates say.

“This is a fantasy reality, like watching ‘Leave it to Beaver,’” said David Stacy, vice president of government affairs at the Human Rights Campaign, an LGBTQ+ advocacy group.

The concepts may appeal to many in Trump’s conservative base, however. Nine in 10 U.S. adults say a husband and wife raising children together is completely acceptable, according to a 2023 poll by the Pew Research Center. Fewer than half say the same about a married gay or lesbian couple raising children together.

Nine in 10 Trump supporters and about 4 in 10 Biden supporters say sex at birth determines if someone is a man or a woman, according to an April Pew poll.

Project 2025 risks GOP voter support over its anti-abortion stance, according to some political analysts. Its foreword also calls for removing from grants, regulations, and legislation words such as abortion, reproductive health, reproductive rights, and any other term “used to deprive Americans of their First Amendment rights.”

The proposal urges that the CDC fund research into abortion risks and complications and that HHS cut federal funding for states that don’t provide data such as the number of abortions performed within their borders.

Project 2025 calls for revisiting approval of the abortion pill mifepristone. It could potentially lose FDA authorization and be subject to new dispensing requirements — such as barring distribution by mail, based on an 1873 law known as the Comstock Act — before that step.

The proposal’s authors say misoprostol, a medication approved to treat ulcers but also used for abortion, would not be affected.

“If the FDA were to reconsider mifepristone because of legal or safety concerns, at most, it would put doctors back in the process without limiting their ability to prescribe other chemical abortion drugs off-label,” Severino said.

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It’s not easy to make public health decisions without access to good data. And epidemiologists and public health workers for Native American communities say they’re often in the dark because state and federal agencies restrict their access to the latest numbers.

The 2010 reauthorization of the Indian Health Care Improvement Act gave tribal epidemiology centers public health authority and requires the federal Department of Health and Human Services to grant them access to and use of data and other protected health information that’s regularly distributed to state and local officials. But tribal epidemiology center workers have told government investigators that’s not often the case.

By July 2020, American Indians and Alaskan Natives had a covid-19 infection rate 3½ times that of non-Hispanic whites. Problems accessing data predated the pandemic, but the alarming infection and death rates in Native American communities underscored the importance of making data-sharing easier so tribal health leaders and epidemiologists have the information they need to make lifesaving decisions.

Tribal health officials have repeatedly said data denials impeded their responses to disease outbreaks, including slowing contact tracing during the pandemic and an ongoing syphilis outbreak in the Midwest and Southwest.

“We’re being blinded,” said Meghan Curry O’Connell, the chief public health officer for the Great Plains Tribal Leaders’ Health Board and a citizen of the Cherokee Nation. The sharing of data has improved somewhat in recent years, she said, but not enough.

Federal investigators and tribal epidemiologists have documented a litany of obstacles keeping state and federal public health information from tribes, including confusion about data-sharing policies, inconsistent processes for requesting information, data that’s of poor quality or outdated, and strict privacy rules for sensitive data on health issues like HIV and substance misuse.

Limiting the ability of tribes and tribal epidemiology centers to monitor and respond to public health issues makes historical health disparities difficult to address. Life expectancy among American Indians and Alaskan Natives is at least 5½ years shorter than the national average.

Sarah Shewbrooks and her colleagues at the Great Plains Tribal Epidemiology Center are among those who’ve found themselves blinded by bureaucratic walls. Shewbrooks said the data dearth was particularly evident during the covid pandemic, when her team couldn’t access public health data available to other public health workers in state and local agencies. Her team was forced to manually record positive cases and deaths in the 311 counties of North Dakota, South Dakota, Nebraska, and Iowa — the region the center serves.

Shewbrooks, director of the center’s data-coordinating unit and its lead epidemiologist, estimates staffers spent more than a year’s worth of their time during the pandemic scraping together their own datasets to steer information to tribal leaders making decisions about closing down reservations and asking residents to isolate at home.

She said the process was frustrating and stressful, especially since it robbed her team of hours they could’ve spent trying to save lives in the communities they serve. The tribes in their region were doing “incredible things,” she said, by providing food and shelter for people who needed to quarantine.

“But they were having to do it all without being given real-time understanding of what’s going on around them,” Shewbrooks said.

Contact tracers who work for state governments cover Native American populations, but it’s important to have people from within the community take the lead, Shewbrooks said. Tribal workers are better equipped to move around within their communities and meet people where they are.

Shewbrooks said state contact tracers relied on calling and texting patients, which is often not the most effective method. Tribal members can be a hard-to-reach community for state workers whose protocol is to move on to the next case if they don’t get a response.

“So many cases were just getting closed,” Shewbrooks said.

In 2022, the Government Accountability Office published a report that confirmed concerns raised by tribal health officials, including at the Great Plains tribal epidemiology center. Federal investigators found that health officials working to address public health issues in Native American communities dealt with federal agencies lacking clear processes, policies, and guidelines for sharing data with tribal officials.

In one example, officials said that as of November 2021, 10 of the 12 tribal epidemiology centers in the U.S. had access to Centers for Disease Control and Prevention covid data, but not all had full data. Some centers had access to case surveillance data that included information on positive cases, hospitalizations, and deaths. Only half said they also had access to covid vaccination data from HHS.

The GAO report also found that staffers responding to data requests at HHS, the CDC, and the Indian Health Service did not consistently recognize tribal epidemiology centers as public health authorities. Center officials told federal investigators that they’d sometimes been asked to request data they needed as outside researchers or through the Freedom of Information Act.

The report recommended agencies make several corrections, including responding to tribal epidemiology centers as required by law and clarifying how agency staffers should handle requests from epidemiology centers.

HHS officials agreed with all the recommendations. The agency consulted with tribal leaders in fall 2022 and, this year, published a draft policy that clarifies what data centers can access.

Some tribal leaders say the proposal is a step in the right direction but is incomplete. Jim Roberts, senior executive liaison in intergovernmental affairs at the Alaska Native Tribal Health Consortium, a nonprofit organization that provides care and advocacy for Alaskan tribes, said the GAO report focused on tribal epidemiology centers, which operate separately from tribal governments, each serving dozens of tribes divided into regions. The report left out tribes, which he said have a right to their data as sovereign nations.

HHS officials declined an interview request, but Samira Burns, principal deputy assistant secretary for public affairs, said the agency is reviewing feedback and recommendations it received from tribal leaders during consultation on the draft policy and will continue to consult with tribes before it’s finalized.

Stronger federal policy on tribal data sharing would help with relationships with states, too, Roberts said. Tribal officials say problems they’ve experienced at the federal level are often worse in states, where laws might not recognize tribes or tribal epidemiology centers as authorities that can receive data.

At the Northwest Tribal Epidemiology Center, which works on behalf of tribes in Washington, Oregon, and Idaho, forging a data-use agreement with state governments in Washington and Oregon before the pandemic helped their response by providing immediate access to near real-time data on emergency room and other health care facility visits. The center’s staff used this data to monitor for suspected covid-related visits that could be shared with tribal leaders.

It took seven months for the center to get access to covid surveillance data from the CDC, said Sujata Joshi, director of the Northwest center’s Improving Data and Enhancing Access project, and about nine months for HHS vaccination data after vaccinations became available. Even after getting the information, she said, there were concerns about its quality.

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LOS ANGELES — Jonnae Thompson has felt for a long time that her dark brown skin and natural hair have made finding work in Hollywood especially hard.

“It’s like this negative connotation,” said the 37-year-old actress, singer, and stand-up comedian, who said she is often asked to audition for villainous roles such as a bully, drug dealer, or pimp.

Her quest for more equitable representation on the big screen isn’t just professionally exhausting. Thompson says anxiety about her skin complexion has affected her health.

“It definitely had a negative impact on my self-esteem,” she said. She recalls being called “charcoal” in kindergarten. “It was big, like, your skin is dark and that’s a problem.”

The term colorism — a form of prejudice and discrimination in which lighter skin is favored over darker skin — was popularized by author Alice Walker in her 1983 book “In Search of Our Mothers’ Gardens: Womanist Prose.”

Clinicians from various ethnic groups have recently begun to draw a direct line between colorism and poor health. A 2023 KFF survey found that, among Black and Hispanic adults, those with self-described darker skin tones reported more experiences with discrimination in daily life compared with those who have lighter skin tones. People who feel they experience daily discrimination can be at higher risk for depression, loneliness, increased alcohol and drug use, and anxiety, data shows.

And colorism can also lead to physical health concerns. Hair straighteners and skin lighteners commonly used by women of color, sometimes to conform to racialized beauty standards, increase their exposure to toxic chemicals, research shows.

Because of the potential health implications, the health care system should pay more attention to colorism, said Regina James, a child and adolescent psychiatrist who heads the American Psychiatric Association’s Division of Diversity and Health Equity.

“Skin color discrimination is so insidious it can literally get under your skin,” she said. “And consciously or subconsciously, it can contribute to low self-esteem and self-confidence, and even be detrimental to one’s mental health.”

Conversations about skin complexion can remain overlooked by mental health professionals who do not have expertise about or awareness of a person’s cultural context, if the conversations happen at all, said Usha Tummala-Narra, a clinical psychologist and professor in the Department of Counseling, Developmental, and Educational Psychology at Boston College.

“There’s no specific training on colorism. Many people are unaware that it exists,” Tummala-Narra said.

But the experience can negatively affect a person’s self-worth, relationships, sense of belonging, and dignity. “These are all really critically important things as human beings that we all need to secure to have good health, both physically and mentally,” she said.

The issue can emerge in childhood for Black and Indigenous people and other people of color, who must navigate fair skin often being seen as superior, a ramification of colonialization. Black children with the darkest complexions experience higher levels of depressive symptoms, found a 2020 study in the journal Society and Mental Health.

Shannon Brown, 34, a former college counselor from the Bronx, New York, who is Black, remembers being called “midnight” by classmates and having family members joke about his skin being difficult to light in family photos. “I’ve just kind of accepted it and try to find the humor in it,” he said. “I feel like most folks aren’t intentionally trying to hurt me, but the jokes get tiresome.”

Shakun Kaushal, a 26-year-old digital communications specialist at the Johns Hopkins Center for Gun Violence Solutions, is Indian American and has a “darker complexion.” She said that in Indian culture one might hear comments like, “Oh, she’s so light and beautiful.”

“I sometimes feel dismissed by people,” said Kaushal, who has searched for an Indian or Black therapist in hopes they might better relate to her lived experience. She believes conversations about colorism should be intergenerational, start early, and get introduced with great care.

“What you say to a child does affect them. They will remember, and it will impact how they feel about themselves and in their skin,” Kaushal said. “We must talk about it.”

The feeling of shame and embarrassment colorism produces in people is palpable and needs to be acknowledged in health care settings, said Roopal Kundu, a dermatologist who founded and directs the Northwestern Medicine Center for Ethnic Skin and Hair in Chicago. Kundu, who is of South Asian heritage, opened the center in 2005 and notes that some cases of diseases like psoriasis, skin cancer, and eczema get diagnosed later, or misdiagnosed, because they present differently on diverse skin tones.

“How can we really make sure, as a field, that we’re taking care of everybody?” she said. “Healthy skin is beautiful skin. And beauty is across every single skin tone that there is.”

Therapists, doctors, and other clinicians from diverse backgrounds say that, in addition to clinical approaches that incorporate cultural competence, more efforts are needed to diversify the pool of mental health practitioners and to collaborate between disciplines.

Without cultural awareness and sensitivity, “you’re not going to get all the information that you need to appropriately diagnose and treat someone,” James said.

Black people are more likely to report difficulty finding mental health providers who understand their background and experiences, a KFF survey found. At the same time, programs that bolster diversity, equity, and inclusion in medical schools are faltering in the wake of the 2023 Supreme Court decision outlawing affirmative action in higher education.

According to the Association of American Medical Colleges, in 2022, about 5% of active psychiatric physicians identified as Black, 16% as Asian, 6% as Hispanic, and fewer than 1% as American Indian or Alaska Native.

Thompson, Brown, and Kaushal all said they had never been treated by a therapist who looks like them.

Thompson, the L.A. comedian, said she drank bleach when she was 10 years old, thinking it would lighten her skin. Fortunately, it caused only nausea.

If she could speak to her younger self, she would say: “You’re beautiful. You’re brilliant.”

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When Kamala Harris was California’s top prosecutor, she was concerned that mergers among hospitals, physician groups, and health insurers could thwart competition and lead to higher prices for patients. If she wins the presidency in November, she’ll have a wide range of options to blunt monopolistic behavior nationwide.

The Democratic vice president could influence the Federal Trade Commission and instruct the departments of Justice and Health and Human Services to prioritize enforcement of antitrust laws and channel resources accordingly. Already, the Biden administration has taken an aggressive stance against mergers and acquisitions. In his first year in office, President Joe Biden issued an executive order intended to intensify antitrust enforcement across multiple industries, including health care.

Under Biden, the FTC and DOJ have fought more mergers than they have in decades, often targeting health care deals.

“What Harris could do is set the tone that she is going to continue this laser focus on competition and health care prices,” said Katie Gudiksen, a senior health policy researcher at University of California College of the Law, San Francisco.

The Harris campaign didn’t respond to a request for comment.

For decades, the health industry has undergone consolidation despite government efforts to maintain competition. When health systems expand, adding hospitals and doctor practices to their portfolios, they often gain a large enough share of regional health care resources to command higher prices from insurers. That results in higher premiums and other health care costs for consumers and employers, according to numerous studies.

Health insurers have also consolidated in recent decades, leaving only a handful controlling most markets.

Health care analysts say it’s possible for Harris to slow the momentum of consolidation by blocking future mergers that could lead to higher prices and lower-quality care. But many of them agree the consolidation that has already taken place is an inescapable feature of the U.S. health care landscape.

“It’s hard to unscramble the eggs,” said Bob Town, an economics professor at the University of Texas.

There were nearly 1,600 hospital mergers in the U.S. from 1998 to 2017 and 428 hospital and health system mergers from 2018 to 2023, according to a KFF study. The percentage of community hospitals that belong to a larger health system rose from 53 in 2005 to 68 in 2022. And in another sign of market concentration, as of January, well over three-quarters of the nation’s physicians were employed by hospitals or corporations, according to a report produced by Avalere Health.

Despite former President Donald Trump’s hostility to regulation as a candidate, his administration was active on antitrust efforts — though it did allow one of the largest health care mergers in U.S. history, between drugstore chain CVS Health and the insurer Aetna. Overall, Trump’s Justice Department was more aggressive on mergers than past Republican administrations.

Harris, as California’s attorney general from 2011 to 2017, jump-started health care investigations and enforcement.

“She pushed back against anticompetitive pricing,” said Rob Bonta, California’s current attorney general, who is a Democrat.

One of Harris’ most impactful decisions was a 2012 investigation into whether consolidation among hospitals and physician practices gave health systems the clout to demand higher prices. That probe bore fruit six years later after Harris’ successor, Xavier Becerra, filed a landmark lawsuit against Sutter Health, the giant Northern California hospital operator, for anticompetitive behavior. Sutter settled with the state for $575 million.

In 2014, Harris was among 16 state attorneys general who joined the FTC in a lawsuit to dismantle a merger between one of Idaho’s largest hospital chains and its biggest physician group. In 2016, Harris joined the U.S. Department of Justice and 11 other states in a successful lawsuit to block a proposed $48.3 billion merger between two of the nation’s largest health insurers, Cigna and Anthem.

Attempts to give the state attorney general the power to nix or impose conditions on a wide range of health care mergers have been fiercely, and successfully, opposed by California’s hospital industry. Most recently, the hospital industry persuaded state lawmakers to exempt for-profit hospitals from pending legislation that would subject private equity-backed health care transactions to review by the attorney general.

A spokesperson for the California Hospital Association declined to comment.

As attorney general of California, Harris’ work was eased by the state’s deep-blue political hue. Were she to be elected president, she could face a less hospitable political environment, especially if Republicans control one or both houses of Congress. In addition, she could face opposition from powerful health care lobbyists.

Though it often gets a bad rap, consolidation in health care also confers benefits. Many doctors choose to join large organizations because it relieves them of the administrative headaches and financial burdens of running their own practices. And being absorbed into a large health system can be a lifeline for financially troubled hospitals.

Still, a major reason health systems choose to expand through acquisition is to accumulate market clout so they can match consolidation among insurers and bargain with them for higher payments. It’s an understandable reaction to the financial pressures hospitals are under, said James Robinson, a professor of health economics at the University of California-Berkeley.

Robinson noted that hospitals are required to treat anyone who shows up at the emergency room, including uninsured people. Many hospitals have a large number of patients on Medicaid, which pays poorly. And in California, they face a series of regulatory requirements, including seismic retrofitting and nurse staffing minimums, that are expensive. “How are they going to pay for that?” Robinson said.

At the federal level, any effort to blunt anticompetitive mergers would depend in part on how aggressive the FTC is in pursuing the most egregious cases. FTC Chair Lina Khan has made the FTC more proactive in this regard.

Last year, the FTC and DOJ jointly issued new merger guidelines, which suggested the federal government would scrutinize deals more closely and take a broader view of which ones violate antitrust laws. In September, the FTC filed a lawsuit against an anesthesiology group and its private equity backer, alleging they had engaged in anticompetitive practices in Texas to drive up prices.

In January, the agency sued to stop a $320 million hospital acquisition in North Carolina.

Still, many transactions don’t come to the attention of the FTC because their value is below its $119.5 million reporting threshold. And even if it heard about more deals, “it is very underresourced and needing to be very selective in which mergers they challenge,” said Paul Ginsburg, a professor of the practice of health policy at the University of Southern California’s Sol Price School of Public Policy.

Khan’s term ends in September 2024, and Harris, if elected, could try to reappoint her, though her ability to do so may depend on which party controls the Senate.

Harris could also promote regulations that discourage monopolistic behaviors such as all-or-nothing contracting, in which large health systems refuse to do business with insurance companies unless they agree to include all their facilities in their networks, whether needed or not. That behavior was one of the core allegations in the Sutter case.

She could also seek policies at the Department of Health and Human Services, which runs Medicare and Medicaid, that encourage competition.

Bonta, California’s current attorney general, said that, while there are bad mergers, there are also good ones. “We approve them all the time,” he said. “And we approve them with conditions that address cost and that address access and that address quality.”

He expects Harris to bring similar concerns to the presidency if she wins.

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

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Céline Gounder, KFF Health News’ senior fellow and editor-at-large for public health, on “CBS Mornings” discussed new research that found the shingles vaccine may delay the onset of dementia. Gounder also discussed a covid-19 study that shows state mask and vaccine mandates save lives on CBS’ “CBS News 24/7.”

• Click here to hear Gounder on “CBS Mornings”
• Click here to hear Gounder on “CBS News 24/7”

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The percentage of people who say they’ve tried to end a pregnancy without medical assistance increased after the Supreme Court overturned Roe v. Wade. That’s according to a study published Tuesday in the online journal JAMA Network Open.

Tia Freeman, a reproductive health organizer, leads workshops for Tennesseans on how to safely take medication abortion pills outside of medical settings.

Abortion is almost entirely illegal in Tennessee. Freeman, who lives near Nashville, said people planning to stop pregnancies have all sorts of reasons for wanting to do so without help from the formal health care system — including the cost of traveling to another state, challenge of finding child care, and fear of lost wages.

“Some people, it’s that they don’t have the support networks in their families where they would need to have someone drive them to a clinic and then sit with them,” said Freeman, who works for Self-Managed Abortion; Safe and Supported, a U.S.-based project of Women Help Women, an international nonprofit that advocates for abortion access.

“Maybe their family is superconservative and they would rather get the pills in their home and do it by themselves,” she said.

The new study is from Advancing New Standards in Reproductive Health, a research group based at the University of California-San Francisco. The researchers surveyed more than 7,000 people ages 15 to 49 from December 2021 to January 2022 and another 7,000-plus from June 2023 to July 2023.

Of the respondents who had attempted self-managed abortions, they found the percentage who used the abortion pill mifepristone was 11 in 2023 — up from 6.6 before the Supreme Court ended federal abortion rights in 2022.

One of the most common reasons for seeking a self-administered abortion was privacy concerns, said a study co-author, epidemiologist Lauren Ralph.

“So not wanting others to know that they were seeking or in need of an abortion or wanted to maintain autonomy in the decision,” Ralph said. “They liked it was something under their control that they could do on their own.”

Kristi Hamrick, vice president of media and policy at Students for Life Action, a national anti-abortion group, said she doesn’t believe the study findings, which she said benefit people who provide abortion pills.

“It should surprise no one that the abortion lobby reports their business is doing well, without problems,” Hamrick said in an emailed statement.

Ralph said in addition to privacy concerns, state laws criminalizing abortion also weighed heavily on women’s minds.

“We found 6% of people said the reason they self-managed was because abortion was illegal where they lived,” Ralph said.

In the JAMA study, women who self-managed abortion attempts reported using a range of methods, including using drugs or alcohol, lifting heavy objects, and taking a hot bath. In addition, about 22% reported hitting themselves in the stomach. Nearly 4% reported inserting an object in their body.

The term “self-managed abortion” may conjure images of back-alley procedures from the 1950s and ’60s. But OB-GYN Laura Laursen, a family planning physician in Chicago, said self-managed abortions using medication abortion — the drugs mifepristone and misoprostol — are far safer, whether done inside or outside the health care system.

“They’re equally safe no matter which way you do it,” Laursen said. “It involves passing a pregnancy and bleeding, which is what happens when you have a miscarriage. If your body doesn’t have a miscarriage on its own, these are actually the medications we give women to pass the miscarriage.”

Since Roe’s end, more than 20 states have banned or further restricted abortion.

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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JACKSONVILLE, Fla. — Facing an ultracompetitive market in one of the nation’s fastest-growing cities, UF Health is trying a new way to attract patients: a combination emergency room and urgent care center.

In the past year and a half, UF Health and a private equity-backed company, Intuitive Health, have opened three centers that offer both types of care 24/7 so patients don’t have to decide which facility they need.

Instead, doctors there decide whether it’s urgent or emergency care —the health system bills accordingly — and inform the patient of their decision at the time of the service.

“Most of the time you do not realize where you should go — to an urgent care or an ER — and that triage decision you make can have dramatic economic repercussions,” said Steven Wylie, associate vice president for planning and business development at UF Health Jacksonville. About 70% of patients at its facilities are billed at urgent care rates, Wylie said.

Emergency care is almost always more expensive than urgent care. For patients who might otherwise show up at the ER with an urgent care-level problem — a small cut that requires stitches or an infection treatable with antibiotics — the savings could be hundreds or thousands of dollars.

While no research has been conducted on this new hybrid model, consumer advocates worry hospitals are more likely to route patients to costlier ER-level care whenever possible.

For instance, some services that trigger higher-priced, ER-level care at UF Health’s facilities — such as blood work and ultrasounds — can be obtained at some urgent care centers.

“That sounds crazy, that a blood test can trigger an ER fee, which can cost thousands of dollars,” said Cynthia Fisher, founder and chair of PatientRightsAdvocate.org, a patient advocacy organization.

For UF Health, the hybrid centers can increase profits because they help attract patients. Those patient visits can lead to more revenue through diagnostic testing and referrals for specialists or inpatient care.

Offering less expensive urgent care around-the-clock, the hybrid facilities stand out in an industry known for its aggressive billing practices.

On a recent visit to one of UF Health’s facilities about 15 miles southeast of downtown, several patients said in interviews that they sought a short wait for care. None had sat in the waiting room more than five minutes.

“Sometimes urgent care sends you to the ER, so here you can get everything,” said Andrea Cruz, 24, who was pregnant and came in for shortness of breath. Cruz said she was being treated as an ER patient because she needed blood tests and monitoring.

“It’s good to have a place like this that can treat you no matter what,” said Penny Wilding, 91, who said she has no regular physician and was being evaluated for a likely urinary tract infection.

UF Health is one of about a dozen health systems in 10 states partnering with Intuitive Health to set up and run hybrid ER-urgent care facilities. More are in the works; VHC Health, a large hospital in Arlington, Virginia, plans to start building one this year.

Intuitive Health was established in 2008 by three emergency physicians. For several years the company ran independent combination ER-urgent care centers in Texas.

Then Altamont Capital Partners, a multibillion-dollar private equity firm based in Palo Alto, California, bought a majority stake in Intuitive in 2014.

Soon after, the company began partnering with hospitals to open facilities in states including Arizona, Indiana, Kentucky, and Delaware. Under their agreements, the hospitals handle medical staff and billing while Intuitive manages administrative functions — including initial efforts to collect payment, including checking insurance and taking copays — and nonclinical staff, said Thom Herrmann, CEO of Intuitive Health.

Herrmann said hospitals have become more interested in the concept as Medicare and other insurers pay for value instead of just a fee for each service. That means hospitals have an incentive to find ways to treat patients for less.

And Intuitive has a strong incentive to partner with hospitals, said Christine Monahan, an assistant research professor at the Center on Health Insurance Reforms at Georgetown University: Facilities licensed as freestanding emergency rooms — as Intuitive’s are — must be affiliated with hospitals to be covered by Medicare.

At the combo facilities, emergency room specialists make medical decisions that determine whether patients are billed for higher-priced ER care or lower-priced urgent care after patients undergo a medical screening. The health system compares the care needed against criteria for urgent- or emergency-level care and bills.

Inside its combo facilities, UF posts a sign listing some of the urgent care services it offers, including treatment for ear infections, sprains, and minor wounds. When its doctors determine ER-level care is necessary, UF requires patients to sign a form acknowledging they will be billed for an ER visit.

Patients who opt out of ER care at that time are charged a triage fee. UF would not disclose the amount of the fee, saying it varies.

UF officials say patients pay only for the level of care they need. Its centers accept most insurance plans, including Medicare, which covers people older than 65 and those with disabilities, and Medicaid, the program for low-income people.

But there are important caveats, said Fisher, the patient advocate.

Patients who pay cash for urgent care at UF’s hybrid centers are charged an “all-inclusive” $250 fee, whether they need an X-ray or a rapid strep test, to name two such services, or both.

But if they use insurance, patients may have higher cost sharing if their health plan is charged more than it would pay for stand-alone urgent care, she said.

Also, federal surprise billing protections that shield patients in an ER don’t extend to urgent care centers, Fisher said.

Herrmann said Intuitive’s facilities charge commercial insurers for urgent care the same as if they provided only urgent care. But Medicare may pay more.

While urgent care has long been intended for minor injuries and illnesses and ERs are supposed to be for life- or health-threatening conditions, the two models have melded in recent years. Urgent care clinics have increased the scope of injuries and conditions they can treat, while hospitals have taken to advertising ER wait times on highway billboards to attract patients.

Intuitive is credited with pioneering hybrid ER-urgent care, though its facilities are not the only ones with both “emergency” and “urgent care” on their signs. Such branding can sometimes confuse patients.

While Intuitive’s hybrid facilities offer some price transparency, providers have the upper hand on cost, said Vivian Ho, a health economist at Rice University in Texas. “Patients are at the mercy of what the hospital tells them,” she said.

But Daniel Marthey, an assistant professor of health policy and management at Texas A&M University, said the facilities can help patients find a lower-cost option for care by avoiding steep ER bills when they need only urgent-level care. “This is a potentially good thing for patients,” he said.

Marthey said hospitals may be investing in hybrid facilities to make up for lost revenue after federal surprise medical billing protections took effect in 2022 and restricted what hospitals could charge patients treated by out-of-network providers, particularly in emergencies.

“Basically, they are just competing for market share,” Marthey said.

UF Health has placed its new facilities in suburban areas near freestanding ERs owned by competitors HCA Healthcare and Ascension rather than near its downtown hospital in Jacksonville. It is also building a fourth facility, near The Villages, a large retirement community more than 100 miles south.

“This has been more of an offensive move to expand our market reach and go into suburban markets,” Wylie said.

Though the three centers are not state-approved to care for trauma patients, doctors there said they can handle almost any emergency, including heart attacks and strokes. Patients needing hospitalization are taken by ambulance to the UF hospital about 20 minutes away. If they need to follow up with a specialist, they’re referred to a UF physician.

“If you fall and sprain your leg and need an X-ray and crutches, you can come here and get charged urgent care,” said Justin Nippert, medical director of two of UF’s combo centers. “But if you break your ankle and need it put back in place it can get treated here, too. It’s a one-stop shop.”

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 HostJulie RovnerKFF 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.The change at the top of the likely Democratic presidential ticket is prompting both abortion rights and anti-abortion organizations to recalibrate their campaigns, even as they fight over finalizing fall ballot proposals in many states.

Meanwhile, former President Donald Trump’s campaign is trying to distance itself from “Project 2025,” the controversial plan reportedly designed for the next GOP administration and put together by the conservative Heritage Foundation and former Trump administration officials. Although the head of the project’s policy arm was pushed out this week, the part of the project creating a database of Trump loyalists to staff a potential new administration remains up and running.

This week’s panelists are Julie Rovner of KFF Health News, Alice Miranda Ollstein of Politico, Lauren Weber of The Washington Post, and Sarah Karlin-Smith of the Pink Sheet.

PanelistsSarah Karlin-SmithPink Sheet@SarahKarlin Read Sarah's stories.Alice Miranda OllsteinPolitico@AliceOllstein Read Alice's stories.Lauren WeberThe Washington Post@LaurenWeberHP Read Lauren's stories.Among the takeaways from this week’s episode:

• Vice President Kamala Harris is promising to “restore reproductive freedom” if elected president; her campaign says that means restoring the constitutional right to an abortion under Roe v. Wade. Despite that goal having slim prospects in Congress, some abortion rights supporters are hoping the federal government would expand abortion access even beyond Roe under her presidency.
• President Joe Biden this week recommended a sweeping overhaul of the Supreme Court, including term limits for justices. Famously an institutionalist, Biden stopped short of embracing the progressive call to add more justices to the high court. Nonetheless, his proposal has been considered politically dangerous, even as the conservative-tilted court has overturned its own precedents and shrugged at its ethics policies — and shifts in the national conversation about the court could have a long-term effect.
• The Trump campaign’s attempts to distance itself from the controversial ideas of Heritage’s Project 2025 are more savvy marketing than anything: Even without adopting the document, the conservative policy personnel behind it could well become the conservative policy personnel of a second Trump administration.
• GOP state officials and anti-abortion groups are launching their next attempts to block potential abortion rights victories at the ballot box. The next few weeks will reveal whether voters in certain influential states — like Arizona and Florida — weigh in on abortion this fall.

Also this week, Rovner interviews KFF Health News’ Elisabeth Rosenthal, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” installment about a preauthorized surgery that generated a six-figure bill.

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

Julie Rovner: The Washington Post’s “Online Portals Deliver Scary Health News Before Doctors Can Weigh In,” by Fenit Nirappil.

Alice Miranda Ollstein: ProPublica’s “A Lab Test That Experts Liken to a Witch Trial Is Helping Send Women to Prison for Murder,” by Duaa Eldeib.

Lauren Weber: The Tributary’s “Testimony: Florida Wrongly Cut People From Medicaid Due to ‘Computer Error,’ Bad Data,” by Charlie McGee.

Sarah Karlin-Smith: KFF Health News’ “Why Many Nonprofit (Wink, Wink) Hospitals Are Rolling in Money,” by Elisabeth Rosenthal; and The Hollywood Reporter’s “New York’s Largest Hospital System Is Setting Its Sights on the Entertainment Business,” by Alex Weprin.

Also mentioned on this week’s podcast:

Politico’s “States Break Out New Tactics To Thwart Abortion Ballot Measures,” by Alice Miranda Ollstein.

click to open the transcriptTranscript: Abortion Heats Up Presidential Race KFF Health News’ ‘What the Health?’ Episode Title: ‘Abortion Heats Up Presidential Race’Episode Number: 358Published: Aug. 1, 2024

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]

Mila Atmos: The future of America is in your hands. This is not a movie trailer. And it’s not a political ad. But it is a call to action. I’m Mila Atmos, and I’m passionate about unlocking the power of everyday citizens. On our podcast “Future Hindsight,” we take big ideas about civic life and democracy and turn them into action items for you and me. Every Thursday, we talk to bold activists and civic innovators to help you understand your power, and your power to change a status quo. Find us at futurehindsight.com, or wherever you listen to podcasts.

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Aug. 1, at 10 a.m. As always, news happens fast and things might change by the time you hear this, so here we go.

We are joined today via video conference by Lauren Weber, of The Washington Post.

Lauren Weber: Hello, hello.

Rovner: Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Hello.

Rovner: And Sarah Karlin-Smith of the Pink Sheet.

Sarah Karlin-Smith: Hi, everybody.

Rovner: Later in this episode, we’ll have my interview with KFF Health News’ Elisabeth Rosenthal, who reported and wrote the latest KFF Health News-NPR “Bill of the Month.” It’s about a woman who had a cochlear implant surgery that was preapproved by her insurer, but still, and say it with me, got an enormous bill anyway. But first, this week’s news.

We’re going to start this week with presidential politics, because I think everyone, or at least me, is still kind of processing the idea that the race is no longer Biden versus Trump, but Harris versus Trump. One thing we have already seen from Vice President [Kamala] Harris is a new focus on reproductive rights. As we mentioned last week, Iowa’s six-week abortion ban took effect this past Monday, making it the 22nd state to impose what the vice president is now calling a “Trump abortion ban,” referring to total bans as well as restrictions that wouldn’t have been allowed under Roe [v. Wade]. Alice, how are abortion rights groups refocusing themselves now that Harris, rather than Biden, is at the top of the ticket?

Ollstein: Well, in one sense, a lot has changed, and in another sense, nothing has changed. I mean, these groups were already holding events with Harris around the country. They stressed that when they endorsed Biden, they also endorsed Harris. They endorsed the ticket, and so it wasn’t a surprise or much of an internal discussion to decide to come out strong and endorse. What’s been sort of interesting for me is the politics and the messaging versus the policy on this front. So these activist groups were really excited about Harris and were saying that they’re confident that she’s going to both campaign and govern more aggressively in favor of abortion rights. And we haven’t really seen concrete signs that that’s the case. We wrote about how she was giving these speeches in her first week as the candidate at the top of the ticket, saying, “I’m going to restore reproductive freedom.” And she kept saying that over and over. And I saw that that became a Rorschach test for a lot of people. And some people said, “Oh, that is code for she’s going to go beyond Roe v. Wade.”

I saw a lot of projection on that front. But when we got the campaign to confirm, they said, “No, she means Roe v. Wade.” So she’s endorsing the exact same policy that Biden was endorsing, which a lot of abortion rights groups say is not good enough. They point out that many people were denied abortions under Roe v. Wade. States could impose all these restrictions, they could have bans on abortions later in pregnancy, they could have restrictions throughout pregnancy, they put clinics out of business, etc. And so the hopes that she would really advocate for going beyond restoring Roe v. Wade have sort of fizzled. Although there’s also a divide between sort of the big mainstream groups and the smaller, scrappier, more sort-of-militant progressive groups.

Rovner: It’s kind of the mirror image of what’s going on on the anti-abortion side.

Ollstein: Absolutely, absolutely. You have hard-liners and then you have more politically pragmatic, “Let’s just get done what we can get done.” And a lot of this conversation is theoretical because the likelihood of a Congress willing to pass either restoring Roe v. Wade, or going further, is very slim. What the administration could do on the executive front is also curtailed by recent Supreme Court opinions on Chevron. So, some of this is theoretical. It’s not totally clear to me what Kamala Harris would do on abortion rights that Biden has not already done. And it seems that a lot of this race is pledging to stop Donald Trump from undoing those things and imposing restrictions.

Rovner: So it looks like another issue that Harris is appearing to be highlighting is medical debt, something she’s been working on as vice president. The federal government this week approved a novel program out of North Carolina that would raise Medicaid rates for hospitals that forgive patient medical debt, as well as automatically enroll eligible low-income patients in financial assistance programs.

Now, there was a study a couple of months back that showed that forgiving medical debt after it’s gone to collections doesn’t actually help people all that much. Their credit rating is still a mess, and they still can’t afford a lot of things. What does seem to help is preventing those debts in the first place. So is this project — which includes some of these things like enrolling people automatically in assistance programs — maybe the beginning of an effort to address this debt further upstream?

Weber: I think, theoretically, it’s the beginning of an effort, but if you read the fine print, none of the hospitals have signed on yet, from what I understand. So, when you’ve got the hospital association saying, “Oh, we’re working on it,” but no one signed on, I don’t know that you have a deal yet. I mean, that remains to be seen. Obviously, this is something that they’re really hoping to get done. But if you don’t have hospital buy-in — which is the major player here — and the hospitals in lobbyists-speak are saying things like, “We think the insurers and other parts of the health care system should be involved,” I’m just hesitant to comment on the longevity of this project before these people actually sign on the dotted line.

Rovner: And it’s important to remember that hospitals are supposed to be doing this anyway. Nonprofit hospitals, at least, are supposed to be doing this anyway. That’s one of the things that they keep their nonprofit status for. And yet we have seen, obviously, rather painfully, over particularly more in this last decade or so, that that’s just not happening. And people are ending up with these big bills, and they’re being sent to collections, and their credit ratings are being ruined, and makes it harder for them to find a place to live, or in some cases get a job. I mean, this spin-out from unpaid medical debt is not great, and affects many other parts of people’s lives.

OK, well meanwhile, President Biden, who is still president for another five and a half months, this week proposed a pretty sweeping overhaul of the Supreme Court, including term limits and enforceable ethics requirements. This obviously isn’t going to happen while he’s still in office, but it lays down a marker going forward for Democrats. I know President Biden was very resistant to calls for major Supreme Court change earlier in his term. I guess some of the scandals that we’ve been hearing about with some of these Supreme Court justices have perhaps made him soften a little bit towards doing something.

Ollstein: I mean, this has kind of bubbled up for a while, and you’ve slowly seen more members of Congress endorsing these kinds of reforms. Biden has, he’s famously an institutionalist. He was resistant to calling for the end of the Senate filibuster. He was resistant to some of these big reforms. He sort of convened committees to study the issue and sort of kick it down the road a bit. But I think in the context of some of this was starting to be announced when he was attempting to save his own presidential candidacy and was shoring up support from progressives on that front. But there is not a Congress, and there is not likely to be a Congress, willing to pass these reforms. And so I think the shift in conversation is still important. And I think some of these reforms that were once considered crazy, fringe ideas are now being taken more seriously by top-level folks. Still, obviously a long way to go. But like you said, all of the scandals around ethics at the Supreme Court have really highlighted and brought this to the fore.

Karlin-Smith: It does seem notable to me that even though he did sort of tease this a little bit as he was still trying to save his campaign, he really didn’t lean into it until he was in this lame-duck period. And that gives you that sense of, it felt politically dangerous a bit to go this far, and gives you a sense of where we are on it. And that he has not brought up what I think some people on the left would like Democrats to think about, which is adding more justices to the Supreme Court, which could be something that I think might have a bigger impact. And there is some justification for that given that the expansion of the circuit court system and so forth over the years. So I think those are two big markers for me that give a sense of, there’s progress in this area, but for people that really want to see major reform, we’re a long way off from that.

Rovner: Yeah. It bears noting that the way that the term-limit proposal is structured, every president would get two appointments, because it would be 18 years and they would be staggered. So you wouldn’t have sort of the odd situation we’re in now, where Democrats have been in the presidency, in the nominating form, for more years than Republicans, and yet there’s now a 6 to 3, basically Republican-appointed majority, on the court. But as Alice says, I don’t think anybody thinks this is going to happen. Somewhat like medical debt, this is going to be a political talking point for this fall.

So, in Republican political news, the head of the Heritage Foundation’s Project 2025 resigned this week, as top staff at the Trump campaign tried to distance their candidate from some of the really-out-there proposals in the 900-page blueprint for the next Republican administration. But while the policy part of Project 2025 may or may not be winding down, we’ve heard differing ideas about the personnel part of the project. The presidential personnel database, which is arguably even more important, remains up and running. Trump has said he wants to remove civil service protections from tens of thousands of federal workers and replace them with people loyal to him and his agenda. And Project 2025 is presumably going to have those people ready, and waiting, and vetted. Sarah, just as an example, what could this mean in an agency like the FDA [Food and Drug Administration]?

Karlin-Smith: The FDA has a pretty small amount of political appointees and so forth, but it could kind of impact tenure of people higher up in senior positions and their ability to stay in them. And even if it doesn’t impact, even if the Trump administration didn’t necessarily go after them directly, I have heard reports from people that suggest it might initiate a series of people leaving, and then trickle-down effect there. And it really makes career positions a lot less secure, in part because it could give a lot of ammunition to basically move people around to jobs they don’t want to be in, or don’t like.

Rovner: Yeah, I mean we saw this during the Trump administration, just with the Trump administration picked up the Bureau of Land Management, moved it to Colorado, and a lot of people quit their jobs. There was, I think a piece of the Ag[riculture] Department that they moved to Kansas City. And civil servants — we’re not talking about these top political appointees — civil servants have wives and spouses, and kids in school, and it’s hard for them to just sort of up and say, “I’m going to move to another part of the country,” without really very much warning.

Weber: If anybody’s wondering, they should probably pick up Michael Lewis’ The Fifth Risk. I would highly recommend it as a very interesting book that gets at what happens if you eliminate career federal employees that you have no idea how important their job is because they operate in the background. So, it’s really helpful background. I just wanted to also add, I think we have to read aloud what the Trump campaign said about Project 2025, which is reports of Project 2025’s demise would be greatly welcomed and serve as notice to anyone or any group trying to misrepresent their influence of President Trump in his campaign: it will not end well with you. Which I found to be just a particularly savvy bit of marketing. Because I mean, the president, former President Trump, has made it very clear that he’s not going to give positions on things that he thinks could cost him votes, which is what I think this statement is from. That doesn’t necessarily mean he’s not going to take Project 2025’s guidebook by letter and key. I find this messaging moment to be very interesting.

Rovner: The people who wrote Project 2025 are people who are currently loyal to President Trump. Many of them are former Trump appointees, or people who worked for Trump. Basically what this is is a much more sophisticated preparation for if he gets back into office than he had in 2016 when he famously said he didn’t think he was going to win. And it took them months, and in some cases years, to actually get people into the administration.

Ollstein: Yeah, it’s become this interesting double-edged sword. Because like you said, when he was elected in 2016, they were clearly unprepared. And when they attempted to do all of these rule changes at federal agencies, a lot of them got blocked in court. They weren’t really ready for prime time. And so this was an attempt to have all of the groundwork laid, so that they could have this sort of blitz to remake federal law as soon as they entered office and have the loyal personnel ready to execute it. But it’s now backfiring politically, and Trump has always sort of been sensitive to portrayal of any group or person being the ideas generator and not himself. I’m thinking of “No puppet” from … if people remember that.

So any sort of portrayal of him as the mouthpiece or the puppet of some other group has always really sort of triggered him. And so you see him lashing out now and saying, “I have nothing to do with this group.” Even though, like you said, this group has lots and lots and lots of ties to him. And the repeated disavowals show that this is a sensitive point for them. But like Lauren said, there’s no sign this is stopping or severing ties to them in the future.

Rovner: And of course, Trump rather famously wants to preserve his ability to say different things to different audiences at different times. Sometimes he contradicts himself in the same paragraph. In fact, frequently he contradicts himself in the same paragraph. He’s thinking aloud, that’s sort of his thing. So he can pretend to be all things to all people. And having things written down, like Project 2025, sort of hamper his ability to do that. I think we all agree that the fact that this guy stepped down does not mean that this is not going to be what’s very much the plan for the administration, assuming he gets back into office.

Well, speaking of former President Trump, on Wednesday he took the stage at the National Association of Black Journalists conference in Chicago. And let us say, it was not very pretty. On abortion, he repeated his false claim that Democrats support abortion in the ninth month and even after birth. That’s murder, people. And he tried to make it clear that the issue is now successfully back to the states to decide, which is what he said he wanted. But Alice, you have a story this week about how anti-abortion forces in several different states are working hard to keep voters from getting to express their views on abortion-related ballot questions. So, what’s sort of the rundown here?

Ollstein: We’ve seen the states that are working to put this on the ballot. They’ve already overcome several waves of lawsuits and attempts by state legislatures to pass new rules, making the ballot initiative process more difficult. And so now we’re nearing the deadline, and we’re seeing a new blitz of efforts, both from Republican state officials and outside anti-abortion groups, to keep these off the ballot, or sort of put a thumb on the scale in terms of inserting wording that is favorable to the anti-abortion side. Inserting cost estimates saying, “Oh, if this passes, it’ll cost the state so much in litigation.” That’s happening in Florida.

And so I think the next few weeks, the certification deadlines, a lot of them are in late August so the next few weeks will be really crucial to see if these will or will not get on the ballot. In certain states, they could also have ripple effects on other political races by spurring higher turnout potentially. You see Democrats hoping that’s the case. But we’re seeing things are not yet settled in a lot of really major states — Arizona, Missouri, Montana, South Dakota, Florida — so wanting to keep a close eye on these fights. Obviously, all of the ones that have happened so far over the past two years have been victories for the pro-abortion-rights side. And knowing that, and anticipating that will continue, you see anti-abortion forces really mobilizing to make sure these votes don’t happen in the first place.

Weber: And as you pointed out, I mean, this is obviously important because this is a turnout election, especially now with the new Harris-Trump dynamic. And so all of these battles that are down-ticket have so much more emphasis now with what we’re looking at, especially as new poll results show this election could be pretty tight. We’ll still see. Obviously, there’s still a lot of adjustment to be done. But I think these battles that Alice reported on are so critical, because they have so much more reverberation than even just the abortion reverberation, but in the possible turnout that could drive other factors.

Rovner: In some of these very swingy states, too. Well, one final interesting piece of news on the reproductive health front this week. A patient in Kansas is suing the University of Kansas Health System for denying her an emergency abortion in 2022 in violation of the federal EMTALA law, the Emergency Medical Treatment and Active Labor Act. This appears to be the first such lawsuit of its type, and the patient is seeking not just financial compensation — her water broke early and she ended up having to go to another state — but she wants the hospital to admit that it violated both federal and Kansas law so that this doesn’t happen to anybody else. Do we expect to see more of these kinds of actions? And somebody remind us what EMTALA does and doesn’t do, and how the fight over this is still live because Supreme Court decide the case out of Idaho anyway.

Ollstein: Yeah. So we have seen some other patients sue over being turned away from hospitals. But what I think is really interesting is that the Biden administration pledged really aggressive enforcement of EMTALA. But yet you’re not seeing this lawsuit come from the administration, you’re seeing it come from a patient, an outside advocacy group. So I think that’s really notable. Maybe the Biden administration is doing more behind the scenes that we don’t know about. I’ve tried to ask them and they have not said. Like you said, the Supreme Court punted on this issue of the intersection between federal patient protections under EMTALA and state abortion bans and where to draw the line. And which one takes precedence when they’re in conflict, or whether they’re in conflict, is also up for debate.

So we could see more of this, but we’ve also seen over the past two years that a lot of patients don’t want to put themselves out there like this and become a public figure in the face of a lawsuit for very understandable reasons in this really painful moment. And so I think that’s why you see groups wanting the administration to do more on the front end to prevent this from happening, rather than patients having to take this on after it happens to them in a devastating way.

Rovner: I have also talked to people in the administration who have suggested to me that they are in fact doing more on this. Although Alice, as you say, we haven’t really seen it publicly. But I mean, I had somebody approach me to make it known that this is something that they are extremely concerned about. There is some reporting out this week from my former colleague, Joan Biskupic, who covers the Supreme Court for CNN, about speculation about that Idaho case was exactly correct. They took the case and they didn’t decide it. They sent it back to the lower court, because they had split 3-3-3. That the liberals wanted to dismiss the case entirely. The three hard-line conservatives wanted to find that Idaho did not have to provide abortions in emergency cases unless the life, rather than both the life and the health, were threatened. And that Chief Justice [John] Roberts and Justice [Brett] Kavanaugh and [Justice] Amy Coney Barrett were concerned and were stuck in the middle.

And the deal that they struck was to put back the stay that had kept the Iowa law from taking effect, but send it back to the lower court, which, of course, is what they ended up doing. So, as we said at the time, this case continues to go on. There is still not sort of a judicial decision about the situations in which hospitals have to provide emergency abortions for people in these cases that are health-threatening, and/or life-threatening, but not imminently life-threatening, which is what we’ve been seeing. So this is obviously something that’s going to continue.

All right, moving on. Medicare and Medicaid turned 59 this week, making the program almost old enough to qualify for benefits. And as of today, we are exactly a month away from the first 10 negotiated drug prices being officially unveiled. Sarah, what are you hearing about how this is going? I think there was another court case this week that pharma lost. So I mean, this is definitely going forward, right?

Karlin-Smith: Right. Novo Nordisk joined the slew of losses for the industry here. There are appeals, but I don’t think anybody is expecting anything to change the dynamic leading up to the announcements around this first set of drugs. The thing to remember is, and a number of the pharma companies that have drugs impacted have been speaking about the dynamics on their financial earnings calls, which just sort of are happening around now for this quarter of the year, and have kind of made some suggestions that have gone headlines like, “Oh, it’s not so bad, it’s fine.” But there’s sort of these caveats that, like, “We still hate the law!” And it’s still problematic. And I think it’s important to kind of understand the dynamics here. So one thing is this first set of drugs that’s going for negotiations are older drugs, just based on the way the law was written. The things around the money, and how long they have to be on the market. When you start a program like this, the first drugs are going to be older. So they’ve been on the market longer than drugs that’ll come up as part of the program in the past. A lot of them have competition, brand competition, are actually in some ways competitors to each other. So there’s a sense that Medicare Part D private plans are already getting pretty significant discounts through that private process.

So I think there’s not a ton of optimism in some ways that the government can do much better. And it’s going to be very hard to figure out whether they did or didn’t. Again, because so much of this is not transparent, right? We don’t actually know. Every Part D plan is going to have different discounts. And even one of the things that’s said is could we look at what other countries are paying compared to what the government gets. Well, even when many of these country systems negotiate discounts, we have a sense they’re getting better discounts than the U.S., but we don’t actually know what they are. So lack of transparency makes it hard.

So, it’s going to be a little bit of, I think, like this thing where the headlines are going to be a bit confusing for people to parse. That doesn’t mean that there may not be savings for taxpayers. There may not be savings for some consumers when they get their copay. But I think we’re going to have to wait and see later on as this law progresses what happens when drugs actually get thrown into the mix earlier on in their life cycle, and when we get what are known as Medicare Part B drugs, which are the drugs that you get at a doctor’s office administered to you, like say, an expensive chemotherapy or something. With those drugs, there really is no negotiation system going on now in the private sector, the government just pays a set formula that people say inflates the cost of drugs.

So, it’s going to be interesting to watch. Democrats are certainly going to highlight this. There’s some thought process they’ll actually try and time the government announcements to the Democratic [National] Convention. But I think it’s going to be really hard for people initially to make clear claims as to whether this is a success or a failure. And certainly industry is going to keep going after the law, particularly on the idea that just even this threat of government negotiation down the line impacts the amount of money and investment that goes into new innovation and treatments for people down the road.

Rovner: Well, I mean, obviously this was sort of a big deal for the administration. So one would think that they would want to have a chance. And of course, I think the first is the Friday before Labor Day. So it’s not the biggest news week in general. So yeah, I wouldn’t be surprised if they tried to do something a little bit beforehand.

OK, that is the news for this week. Now we will play my Bill of the Month interview with Elisabeth Rosenthal, and then we will come back and do our extra credits.

I am so pleased to welcome back to the podcast my KFF Health News colleague, Elisabeth Rosenthal, who reported and wrote the latest KFF Health News-NPR Bill of the Month. Libby, of course, is the person who launched this entire project in the first place more than six years ago. Libby, welcome back to “What the Health?”

Elisabeth Rosenthal: Thanks for having me again.

Rovner: So, tell us about this month’s patient. Who she is, where she’s from, and what kind of medical care she got.

Rosenthal: Well, her name is Caitlyn Mai, and she’s this wonderful woman from Oklahoma who, basically she needed a cochlear implant, because she’s had single-sided deafness since an infection when she was 12. And people will go like, “Single-sided deafness, what’s the big deal? She has one hearing ear.” But she couldn’t locate where things were, she couldn’t have conversations because she didn’t know who was talking. So actually, over time it’s become a real impediment in school and in work life. She got approved to have a cochlear implant. She was so excited, because it really would change her life. And she gets the implant: It’s magic. She can suddenly find her phone if it’s lost when it rings. And she’s so excited, except then she gets a bill for $139,000.

Rovner: Yeah. So let’s go back a second. As you have advised us so many, many times, she did all of her homework before the surgery …

Rosenthal: Totally.

Rovner: … checking to make sure she had the paperwork for the prior authorization from her insurance company, and checking to make sure that the hospital and all of the doctors were in-network. And as you say, the bill came! So what happened here?

Rosenthal: Well, the problem is we say, “Oh, the patient’s not responsible, there’s prior authorization,” blah, blah, blah, but there’s no problem in trying. You generate a bill, you send it to a patient, it scares the pants off of them. She said she had to leave work she was so upset. And my first piece of advice, which I would never give people in any other part of their lives is, “Don’t pay the bill.” You get a bill, it says you owe $139,000. Of course, she couldn’t pay it. And I believe it also said, “Hey, if you don’t have $139,000, you can pay it off with $19,000-a-month payments.”

And this is a young woman, getting started in life, newly married. And I guess $19,000 a month wasn’t a viable alternative. So Caitlyn starts doing what many patients do, and we’ve seen this more and more in Bill of the Month: She calls the hospital, she calls the insurer. She’s like the referee. Like, the insurer says they didn’t do the billing codes right. She calls the hospital and says, “Oh, you didn’t give us an itemized bill. Can you generate one?” She calls the insurance, says they’re generating an itemized bill. They go back and forth, and back and forth. Then the itemized bill isn’t right, it contains the wrong codes. And in the meantime, for three months, or four months even, she’s getting these bills that say what you owe now: “prompt payment,” “discount,” and “overdue.” And many patients now are in the terrifying position of playing go-between between their provider and their insurance.

She actually said to the provider, “Send me an itemized bill. Send it to me and I will send it to the right person at the insurance company.” And she said to them, “Look, I’ve done all your work for you. Now just figure it out, you guys.” And, in the meantime, she wasn’t actually sent to collections, but threats were made and it was scary. And she spent endless amounts of time. She works for a nonprofit. She’s lucky, she has a job where she can play this kind of go-between role. But really it should be the provider and the insurer that work it out when you have preauth[orization]. There was no reason why any bills should be sent. And that’s one of my mantras. While you’re working this stuff out, don’t send patient bills, because they’re not responsible for this stuff.

Rovner: Well, that’s the whole point of Congress passing the No Surprises Act, that was supposed to take the patient out of the middle. Why is the patient still in the middle?

Rosenthal: Well, because the No Surprises Act did a lot of great things. It held the patient harmless. And this is actually not a surprise bill, it’s a slightly different issue. But even with the No Surprises Act and with surprise bills, it never said you can’t try. And that’s the problem. Americans are good bill-paying citizens. You send people a bill, and they think, “Wow, I guess I owe it.” So what should be added to the No Surprises Act — and I’m not supposed to use the word should — is you can’t send a bill until the insurer and the provider work it out. I know my mailbox is filled with medical bills that I know I don’t owe, right? But the mantra of the provider is, “Well, there’s no harm in trying. Let’s see if someone pays.”

Rovner: Eventually, she did get this worked out.

Rosenthal: She did get this worked out after hours of her time playing go-between, and many hours spent terrified that she would end up somehow having to foot this bill. Once again, the treatment is miraculous. The bills are not miraculous. I mean, they’re miraculous, but in a really different way. They’re horrifying.

Rovner: So what’s the takeaway here? I mean, we’ve given all the advice, “Don’t pay the first bill. Do your homework in advance.” Is there anything else that you can do to avoid getting six-figure bills for preauthorized surgery?

Rosenthal: Well, there is that “don’t pay your bill” advice, and “don’t be scared by the prompt payment discount,” which she had, too. But I think, unfortunately, you have to be the go-between often. And that’s a terrible position for Americans to be in, because it’s really an equity issue. You and I have jobs and knowledge where we can navigate between these two warring parties, essentially, being the peacemaker. And Caitlyn was lucky she had that kind of job. But many Americans don’t have 20 hours to spend on the phone to avoid a huge bill, and they end up in collections if it’s huge. Or if it’s a small bill — and I’ve done this, and I feel like I’m so angry when I do — if it’s a small bill, you’re like, “All right, fine. I’ll just pay it to get this over with.” Even though I know I don’t owe it.

So I do think there should be a policy that you can’t try to send bills to patients that they don’t owe. They know the patients don’t owe these bills. But like I said, there’s no harm in trying, and there’s no HHS [Department of Health and Human Services] police force out there saying, “You shouldn’t do this.” So, it should have been part of the act, but I think the health care system is endlessly agile in figuring out ways to get around laws that Congress has passed to rein in some of their more outrageous practices.

Rovner: As I like to say, full employment for health care reporters. Libby Rosenthal, thank you so much.

Rosenthal: Take care, Julie. Thanks.

Rovner: OK, we are back. It’s time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Sarah, why don’t you go first this week?

Karlin-Smith: Sure. I looked at a piece from Elisabeth Rosenthal, “Why Many Nonprofit (Wink, Wink) Hospitals Are Rolling in Money.” And we sort of alluded to this in the conversation around medical debt. But nonprofit hospitals are supposed to, as part of their nonprofit status, be providing certain sorts of commitments to how they serve patients and our greater society. And over the years, they have morphed from looking not much like nonprofits in many ways. And her lead sort of talks about the various for-profit businesses that they have acquired and lumped under their umbrella, and how that affects what they’re doing. And some of them do not even necessarily seem completely connected to health care.

And just, again, it raises this issue of if you’re going to have this nonprofit status you should be fulfilling that other end of the commitment for not paying taxes. And if you don’t, perhaps we need to rethink that, if we are not getting the charity care and the other commitments to society, is health that we should get. And I wanted to flag, it was a Hollywood Reporter article [“New York’s Largest Hospital System Is Setting Its Sights on the Entertainment Business,”] that I had seen last week about Northwell [Health] Hospital getting into the movie and filmmaking business. And that just gives you a crazy example of what some of these nonprofit systems are doing. And I think it’s why it’s become so egregious and people have been making marks about it.

Rovner: Congress has been talking about the “nonprofit” health entities, particularly hospitals, since the 1990s. It goes along with drug prices, this sort of evergreen issue on Capitol Hill. Lauren, why don’t you go next?

Weber: Yeah. I have something from The Tributary called “Testimony: Florida Wrongly Cut People From Medicaid Due to ‘Computer Error,’ Bad Data.” It’s a story we’ve heard over and over again, but I will just note that highlighted in this story is the company Deloitte, who my former colleagues, who I love dearly at KFF News, Rachana Pradhan and Samantha Liss, had a great investigation on just, I think, a month ago? So, I think that you see these stories about people being removed from Medicaid rolls. And to be clear, this was in Florida, and I believe it was a bunch of moms who were removed the year after they gave birth. So, these are serious consequences for “computer errors.” And I mean, we have no idea the catastrophic impact these could have had. But I think it’s important to keep an eye on this, and I know Racha and Sam certainly have. And pretty wild stuff to see continued reporting on that.

Rovner: We’ve seen a continuing software programs that went in and thought that they would sort of efficiently look at household income, and to determine whether people were still eligible. And forgot that when they were programming it, that eligibility varies by income, depending on whether you’re a kid, or a pregnant woman, or a mom who’s just given birth. That those eligibility amounts are not the same, and that you can’t just go in and say, “You’re over a certain cutoff, you’re off.” So we’re continuing to see this in the continuing unwinding. Alice.

Ollstein: So, I have a really interesting piece from ProPublica about something I had never heard about. It’s called “A Lab Test That Experts Liken to a Witch Trial Is Helping Send Women to Prison for Murder.” So this is about a forensic practice that some states and counties use for determining whether a baby was stillborn, or that the mother ended the baby’s life after it was born alive. Sorry if this is graphic, folks, but it involves removing the lungs and seeing if they float or not. The reasoning being that that will help you determine if the baby was born alive and took a breath before it died, or if it was stillborn. But we’ve been learning about a lot of forensic “tests.” This is pseudoscience. It is really inaccurate. There are many ways that this could inaccurately convict someone of murder when, in fact, they suffered a stillbirth. So I think people think it’s scientific, it’s unbiased, but science is more complicated than that. So this was a really fascinating story.

Rovner: Yeah, this is something that’s been around for a good while. I became aware of it in, I think, the 2010s, when it was used to convict someone who, I believe her conviction was eventually overturned.

Well, my extra credit this week is from The Washington Post by Fenit Nirappil, and it’s called “Online Portals Deliver Scary Health News Before Doctors Can Weigh In.” It’s about a likely unintended impact of the transparency provisions of the 2016 [21st Century] Cures Act, requiring that patients be given access to test results as soon as they’re available, even before their doctors in many cases. Doctors are lobbying for a change in the regulations so they can at least have time to review the results first, so patients don’t open up a portal and find out that they have cancer. But the Biden administration, at least so far, says it’s the patient’s own information and that the patients have a right to it.

The story’s a really very nuanced look at how the solution to just about every problem in health policy inevitably creates problems of its own.

OK, that is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks as always to our technical guru, Francis Ying, and our editor, Emmarie Huetteman. As always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can still find me at X, @jrovner. Sarah?

Karlin-Smith: I’m @SarahKarlin.

Rovner: Lauren?

Weber: @LaurenWeberHP on X. “HP” is for health policy.

Rovner: Alice.

Weber: @AliceOllstein on X.

Rovner: We will be back in your feed next week. Until then, be healthy.

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It’s Saturday afternoon, and your 4-year-old is bleeding from a gash on his face after a playtime mishap.

Should you go to the emergency room or the urgent care clinic?

VHC Health in Arlington, Va., plans to soon join a small but growing number of hospitals moving to resolve this dilemma by offering both types of care at a single outpatient center. Officials at the hospital, formerly Virginia Hospital Center, say they hope to start construction this year on a facility in nearby Falls Church. They’re touting it as the first of its kind in Virginia.

“Our model aims to address this uncertainty by offering triage and directing patients to the appropriate service, ensuring they receive timely and cost-effective care,” said Adrian Stanton, a vice president at VHC.

At its combo facility, the ER will be open 24/7, with the urgent care operating extended hours that could include some evenings and weekends, he said.

Fairfax County officials are still reviewing the building plans, a process expected to last into the fall. It is estimated construction will take 18 months.

VHC would join about a dozen health systems in 10 states working with Intuitive Health to open hybrid ER-urgent care facilities. Founded by emergency physicians, Intuitive ran independent hybrid centers in Texas before Altamont Capital Partners, a multibillion-dollar private equity firm, bought a majority stake and began partnering with hospitals.

At the facilities, doctors decide whether a patient needs urgent or emergency care — the health system bills accordingly — and inform the patient of their decision before testing or treatment begins.

Emergency care is almost always more expensive than urgent care. For patients who might otherwise show up at the ER with an urgent care-level problem — a small cut that requires stitches or an infection treatable with antibiotics — the savings could be hundreds or thousands of dollars.

For instance, at UF Health’s three hybrid facilities in Jacksonville, Fla., urgent care services are offered for an “all-inclusive” $250 fee for patients who pay cash.

While no research has been conducted on this new hybrid model, consumer advocates worry that hospitals are more likely to route patients to costlier ER-level care whenever possible. For instance, some services that trigger higher-priced, ER-level care at UF Health’s facilities — such as bloodwork and ultrasounds — can be obtained at some urgent care centers.

“That sounds crazy, that a blood test can trigger an ER fee, which can cost thousands of dollars,” said Cynthia Fisher, founder and chair of PatientRightsAdvocate.org.

The centers can increase hospital profits because they help attract patients, leading to more revenue through diagnostic testing and referrals for specialists or inpatient care.

On a recent visit to one of UF Health’s facilities, several patients said in interviews that they sought a short wait for care. None had sat in the waiting room for more than five minutes.

“Sometimes urgent care sends you to the ER, so here you can get everything,” said Andrea Cruz, 24, who was pregnant and came in for shortness of breath. Cruz said she was being treated as an ER patient because she needed blood tests and monitoring.

Read my full story here.

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

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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Vice President Kamala Harris “endorsed free taxpayer-funded government health care for all illegal aliens.”

Former President Donald Trump, July 24, in a speech at a rally in Charlotte, North Carolina.

Attacking Vice President Kamala Harris on immigration, Republicans and allies of former Donald President Trump’s are saying the presumptive Democratic presidential candidate supported using taxpayer dollars to provide free health coverage to immigrants who are in the country without legal permission.

Senate and House candidates, an American political action committee supporting Trump, and the Republican National Committee have made similar assertions in recent days.

We contacted the Trump and Harris campaigns for comment about Trump’s statement, but neither responded.

The claims are misleading. It’s true that Harris supported allowing immigrants residing in the U.S. to obtain public health insurance regardless of legal status. During the first 2019 Democratic presidential primary debate in Miami, Kamala Harris raised her hand when a moderator asked candidates to raise their hands if their administration’s health plan would cover immigrants who are in the country illegally.

But that doesn’t mean Harris specifically said she supported taxpayer funding for the benefits or that the health coverage would be free.

PolitiFact has checked similar claims Republicans and Trump made in 2019 and found them Mostly False. The moderator didn’t ask Harris and the other candidates directly whether their plans would provide the coverage free of charge or with taxpayer money, so the claim is unsubstantiated.

Recently, Republicans have pointed to statements Harris made in 2019 while running for president to portray her as supporting giving public benefits to immigrants living in the country illegally. Specifically, CNN’s Jake Tapper asked Harris whether her “Medicare for All” plan would cover such immigrants.

The National Republican Senatorial Committee on July 23 posted on the social platform X a clip of the interview with the message: “FLASHBACK: Kamala Harris tells Jake Tapper she endorses universal healthcare and Medicare-for-all for illegal immigrants.”

But that clip doesn’t show her saying that. Instead, in response to a question about whether Medicare for All should apply to people in the country illegally, she said, “I am opposed to any policy that would deny in our country any human being from access to public safety, public education, or public health, period.” Tapper didn’t ask anything else about this.

Medicare for All is a system, promoted by some Democrats, in which all Americans would get their health insurance from a government program modeled after the one that currently covers people 65 and older and people with disabilities.

Under the Emergency Medical Treatment and Labor Act, which became law in 1986, all patients regardless of citizenship or immigration status are already entitled to treatment in hospital emergency rooms.

Some anti-immigration groups say they still believe Harris supports taxpayer-paid health benefits for immigrants lacking legal residency.

“Instead of pushing back, she at the very least implicitly endorses Medicare for illegal aliens,” said Joey Chester, a spokesperson for Federation for American Immigration Reform, a group that seeks to reduce overall immigration. That she raised her hand during the 2019 debate means her position is to give taxpayer-funded health care benefits to people who are in the country illegally, he added.

Harris’ proposal would have provided comprehensive health insurance to all Americans. But it was not all free. She would have allowed Americans to immediately buy into the program while expanding it over 10 years. The plan she produced was similar to current Medicare, in which people can buy plans that the federal government or private insurers administer.

A 10-year phase-in would automatically enroll newborns and uninsured people. But her proposal didn’t break down how it would pay for coverage of recipients living in the U.S. without authorization.

Harris wrote in a 2019 article on Medium that “good options” to pay for Medicare for All plans include an income-based premium by employers, higher taxes on the wealthiest 1% of Americans, taxing Wall Street trades, and savings from accelerating health care-delivery system reforms and changes in the way providers are paid.

California, where Harris served as attorney general from 2011 to 2017, was the first state this year to expand Medicaid eligibility to all qualified immigrants regardless of legal status, phasing it in over several years. Medicaid is a federal-state health program that provides health coverage to low-income and disabled adults.

The California program for immigrants is funded almost entirely by state dollars, according to the Public Policy Institute of California, a nonprofit research institution. Federal law generally bans states from using federal money to pay for health coverage for immigrants living in the country without legal permission.

However, taxpayers can bear the brunt of uncompensated care, when people without insurance — including immigrants lacking legal residency — seek care at hospitals or from other providers. The costs are passed on to other consumers in the form of higher prices and are considered a drain on state and local government budgets.

“Government payments are the main source for helping to defray providers’ costs for care to the uninsured, and those government payments are ultimately funded by taxpayers,” said Laurel Lucia, health care program director at the University of California-Berkeley Center for Labor Research and Education Center, which provides research and policy information.

Immigrants who are in the country illegally also pay billions of dollars in taxes.

“If she does support subsidized coverage for noncitizens, I’d see that as a good thing, not a bad thing,” said Sabrina Corlette, co-director of the Center on Health Insurance Reforms at Georgetown University’s McCourt School of Public Policy. “Many recent immigrants are taking care of our children, our elderly, working in hospitality, food service, and food production. Isn’t it in our best interests for these folks to have access to good health care?”

Our Ruling

Republicans have sought to portray Harris as extreme on immigration and assert that she supports free, taxpayer-funded health benefits for immigrants who are in the country illegally.

Harris signaled in 2019 that her Medicare for All proposal would cover all immigrants regardless of status. She has also said that she would oppose any policy that would deny anyone in the country access to “public health.” However, health policy and immigration experts say there’s no evidence she would provide the coverage free, paid for by other taxpayers. Immigrants lacking legal residency also pay taxes.

Harris has not expressly said she supports free, taxpayer-supported health coverage for immigrants living in the U.S. illegally.

Trump’s statement contains an element of truth but ignores critical facts that would give a different impression. We rate this claim Mostly False.

SourcesYouTube, former President Donald Trump rally in Charlotte, North Carolina, July 24, 2024.

YouTube, Democratic presidential primary debate in Miami, June 27, 2019.

X, Republican National Committee post of Jake Tapper’s State of the Union interview with Kamala Harris, remarking on immigrant health care, July 23, 2024.

Email interview with Edwin Park, research professor at the McCourt School of Public Policy at Georgetown University, July 24 and July 25, 2024.

Email interview with Sabrina Corlette, research professor, founder, and co-director of the Center on Health Insurance Reforms at Georgetown University’s McCourt School of Public Policy, July 25, 2024.

Email interview with Laurel Lucia, health care program director at the University of California-Berkeley Labor Center, July 24 and 25, 2024.

Email interview with Joey Chester, spokesperson, Federation for American Immigration Reform, July 25, 2024.

PolitiFact, “Fact-Checking Trump Ad on Democrats, Health Care for Immigrants Illegally in the Country,” Aug. 1, 2019.

PolitiFact, “Florida GOP Chair Twists’ Response by Democrats at Debate on Health Care for Undocumented Immigrants,” Nov. 8, 2019.

Medium, “Kamala Harris: My Plan for Medicare for All,” July 29, 2019.

American Immigration Council, “Adding Up the Billions in Tax Dollars Paid by Undocumented Immigrants,” April 4, 2016.

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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HELENA, Mont. — Montana is proposing wide-ranging rules for licensing abortion clinics under a disputed state law, raising a new potential obstacle for patients even as a constitutional amendment to protect access appears headed for the November ballot.

The proposed rules, released July 26 by the state Department of Public Health and Human Services, would set requirements for facilities that perform abortions for or provide medication abortion to at least five patients a year, excluding hospitals and outpatient surgical centers. Clinics would have to meet minimum limits for the size of their rooms and hallways, submit to annual state inspections, maintain written patient transfer agreements with hospitals, and be led by a medical director who is a licensed physician.

Nurse practitioner Helen Weems, who runs All Families Healthcare in Whitefish, one of three organizations that provide abortions in Montana, said the proposed regulations were unnecessary and would limit access to abortion in the state.

“These requirements, including the requirement that abortion clinics have a physician medical director, are not about patient health or safety — they are purely about creating havoc and hardship for abortion providers,” said Weems, who successfully sued the state in 2018 to strike down a law requiring that abortions be performed only by physicians or physician assistants.

Many of the proposed rules are similar to laws and regulations passed in about two dozen other states, and their supporters call them necessary safeguards for patient safety.

“Their objections to very reasonable requirements — like annual inspections, having lit exit pathways, and making sure a facility director is in good standing — show their disregard for the women who walk through their doors,” said Kelsey Pritchard, director of state public affairs for Susan B. Anthony Pro-Life America, a group opposed to abortion.

In the public notice of the rules, state health officials said most of the proposed requirements are based on those for outpatient surgical centers or on minimum standards imposed on all health care facilities and “represent the appropriate level of regulatory requirements to impose on abortion clinics.”

Health department spokesperson Holly Matkin said department officials can’t comment further because of pending litigation.

Abortion rights advocates say the rules would do nothing to protect patients while raising costs for clinics. They call such rules “TRAP” laws, which stands for targeted restrictions on abortion providers.

“Laws targeting abortion providers result in closure disproportionately affecting independent abortion clinics and the communities they serve,” said Erin Grant, co-executive director of Abortion Care Network, an association representing independent abortion clinics.

Similar rules were popular in the 2010s among states whose political leaders opposed abortion, but few states have passed them since the U.S. Supreme Court overturned Roe v. Wade in 2022, allowing for more restrictive state bans.

“They’re a blast from the past,” said Ivette Gomez, a women’s health policy analyst at KFF, a health information nonprofit that includes KFF Health News. “Their main goal was to make it difficult to provide abortion services.”

The Guttmacher Institute, a nonprofit abortion rights research group, cites TRAP laws as a main factor behind a decrease of 50 clinics in the South and 33 clinics in the Midwest from 2011 to 2017.

Attempts by Montana’s Republican-led legislature and Republican governor to pass an abortion ban or more severe restrictions on access have been stymied by a state Supreme Court ruling in 1999 that extended the state constitution’s privacy protections to a person’s medical decisions — including abortion.

The proposed regulations were drafted to accompany a state law, House Bill 937, that creates licenses for clinics that perform abortions. It was among several anti-abortion laws the state passed in 2023 that the courts have blocked. Others include a ban on abortions after 15 weeks of pregnancy, a ban on dilation-and-evacuation procedures, and a measure that made it more difficult for the state’s Medicaid program to pay for abortions.

Weems, her clinic, and the Blue Mountain Clinic in Missoula, which also provides abortions, sued to block the licensure law from taking effect, arguing it would unconstitutionally discriminate against abortion clinics by singling them out for regulation. Planned Parenthood, which provides abortions and has clinics in Billings, Great Falls, and Helena, is a plaintiff in lawsuits challenging other state anti-abortion laws.

A state district court judge in Helena granted All Families and Blue Mountain a temporary restraining order against HB 937 because the rules hadn’t yet been drafted. Now that they have been released, the rules go through a 30-day public comment period, including an Aug. 16 public hearing, before they can be finalized by the health department.

Judge Chris Abbott’s order blocks the law from taking effect until 60 days after the state health department adopts the regulations and both sides review them.

The Montana rules also would require the state to investigate any complaint against a clinic, and require clinics to keep employee and patient files that can be inspected by state regulators, conduct background checks and annual training of employees, and document that patients gave informed consent and were given a hotline number to help people who may be victims of sex trafficking or are being coerced into having an abortion.

Some of the rules could be waived depending on the scope of abortion services provided — for example, if a clinic has a policy not to abort a fetus over a certain gestational age, according to the draft.

It’s unclear what will happen to the licensure rules if they’re adopted and voters in November approve a ballot measure to amend the state constitution to explicitly protect abortion rights. The secretary of state’s deadline to certify the proposed constitutional amendment, which has been in and out of court for months, is Aug. 22, according to Richie Melby, a spokesperson for the office. Organizers say they have exceeded the signatures needed to place the question on the ballot.

The ballot initiative would say, in part, that the right to abortion “shall not be denied or burdened unless justified by a compelling government interest achieved by the least restrictive means.”

If both the constitutional amendment and the abortion license regulations are adopted, it would likely spark a legal battle around whether the rules are a justifiable burden, Gomez said.

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A new study lends weight to fears that more livestock workers have gotten the bird flu than has been reported.

“I am very confident there are more people being infected than we know about,” said Gregory Gray, the infectious disease researcher at the University of Texas Medical Branch who led the study, posted online Wednesday and under review to be published in a leading infectious disease journal. “Largely, that’s because our surveillance has been so poor.”

As bird flu cases go underreported, health officials risk being slow to notice if the virus were to become more contagious. A large surge of infections outside of farmworker communities would trigger the government’s flu surveillance system, but by then it might be too late to contain.

“We need to figure out what we can do to stop this thing,” Gray said. “It is not just going away.”

The Centers for Disease Control and Prevention bases decisions on its surveillance. For example, the agency has bird flu vaccines on hand but has decided against offering them to farmworkers, citing a low number of cases.

But testing for bird flu among farmworkers remains rare, which is why Gray’s research stands out as the first to look for signs of prior, undiagnosed infections in people who had been exposed to sick dairy cattle — and who had become ill and recovered.

Gray’s team detected signs of prior bird flu infections in workers from two dairy farms that had outbreaks in Texas earlier this year. They analyzed blood samples from 14 farmworkers who had not been tested for the virus and found antibodies against it in two. This is a nearly 15% hit rate from only two dairy farms out of more than 170 with bird flu outbreaks in 13 states this year.

One of the workers with antibodies had been taking medicine for a lingering cough when he agreed to allow researchers to analyze his blood in April. The other had recently recovered from a respiratory illness. She didn’t know what had caused it but told researchers that untested farmworkers around her had been sick too.

Richard Webby, director of the World Health Organization Collaborating Center for Influenza at St. Jude Children’s Research Hospital in Memphis, Tennessee, said the results confirmed his suspicions that the 13 human bird flu cases reported this year by the CDC were an undercount.

“Maybe what we see isn’t exactly the tip of the iceberg, but it’s certainly not the whole story,” Webby said.

Little Testing of Farmworkers

Although small, the study gives fresh urgency to reports of undiagnosed ailments among farmworkers and veterinarians. The CDC has warned that if people are infected by the seasonal flu and the bird flu simultaneously, the two types of viruses could swap genes in a way that allows the bird flu to spread between people as easily as seasonal varieties.

No evidence suggests that’s happening now. And asymptomatic cases of the bird flu appear to be rare, according to a Michigan antibody study described by the CDC on July 19. Researchers analyzed blood samples from 35 workers from dairy farms that had outbreaks in Michigan, and none showed signs of missed infections. Unlike the study in Texas, these workers hadn’t fallen sick.

“It’s a small study, but a first step,” said Natasha Bagdasarian, Michigan’s chief medical executive. She said that the state was boosting outreach to test farmworkers but its efforts were complicated by systemic issues like precarious employment that renders them vulnerable to getting fired for calling out sick.

Without more assistance for farmworkers, and cooperation between the government and the livestock industry, Gray said, the U.S. risks remaining in the dark about this virus.

“There’s a lot of genomic studies and laboratory work, but farms are where the real action is,” Gray said, “and we’re not watching.”

Communication Breakdown

A dairy worker in Colorado told KFF Health News that he sought medical care about a month ago for eye irritation — a common symptom of the bird flu. The doctor conducted a usual checkup, complete with a urine analysis. But the farmworker hadn’t heard of the bird flu, and the clinician didn’t mention it or test for the virus. “They told me I had nothing,” he said in Spanish, speaking on the condition of anonymity because he feared retaliation from employers.

This dairy worker and two in Texas said their employers have not provided goggles, N95 masks, or aprons to protect them from milk and other fluids that could be contaminated with the virus. Buying their own gear is a tall order because money is tight.

As is going to the doctor. One worker in Texas said he didn’t seek care for piercing headaches and a sore throat because he doesn’t have health insurance and can’t afford the cost. He guessed the symptoms were from laboring long hours in sweltering barns with limited water. “They don’t give you water or anything,” he said. “You bring your own bottles.” But there’s no way to know the cause of symptoms — whether bird flu or something else — without testing.

About a fifth of workers on livestock farms are uninsured, according to a KFF analysis, and a similar share have household incomes of less than $40,000 a year.

The three farmworkers hadn’t heard of the bird flu from their employers or state health officials, never mind offers of tests. The CDC boasted in a recent update that, through its partnership with Meta, the company that owns Facebook and Instagram, bird flu posts have flickered across computer and smartphone screens more than 10 million times.

Such outreach is lost on farmworkers who aren’t scrolling, don’t speak English or Spanish, or are without smartphones and internet access, said Bethany Boggess Alcauter, director of research and public health programs at the National Center for Farmworker Health. She and others said that offers of protective gear from health officials weren’t reaching farms.

“We’ve heard that employers have been reticent to take them up on the offer,” said Christine Sauvé, policy and engagement manager at the Michigan Immigrant Rights Center. “If this starts to transmit more easily person to person, we’re in trouble,” she said, “because farmworker housing units are so crowded and have poor ventilation.”

Clinics might alert health officials if sick farmworkers seek medical care. But many farmworkers don’t because they lack health insurance and could be fired for missing work.

“The biggest fear we hear about is retaliation from employers, or that someone might be blacklisted from other jobs,” Sauvé said.

Flu Surveillance

The CDC assesses the current bird flu situation as a low public health risk because the country’s flu surveillance system hasn’t flagged troubling alerts.

The system scans for abnormal increases in hospital visits. Nothing odd has turned up there. It also analyzes a subset of patient samples for unusual types of flu viruses. Since late February, the agency has assessed about 36,000 samples. No bird flu.

However, Samuel Scarpino, an epidemiologist who specializes in disease surveillance, said this system would miss many emerging health threats because, by definition, they start with a relatively small number of infections. Roughly 200,000 people work on farms with livestock in the United States, according to the CDC. That’s a mere 0.1% of the country’s population.

Scarpino said the CDC’s surveillance would be triggered if people started dying from the bird flu. The 13 known cases have been mild. And the system will probably pick up surges if the virus spreads beyond farmworkers and their closest contacts — but by then it may be too late to contain.

“We don’t want to find ourselves in another covid situation,” Scarpino said, recalling how schools, restaurants, and businesses needed to close because the coronavirus was too widespread to control through testing and targeted, individual isolation. “By the time we were catching cases,” he said, “there were so many that we were only left with bad options.”

Troubling Signs

Researchers warn that the H5N1 bird flu virus has evolved to be more infectious to mammals, including humans, in the past couple of years. This drives home the need to keep an eye on what’s happening as the outbreak spreads to dairy farms across the country.

The bird flu virus appears be spreading mainly through milk and milking equipment. But for the first time, researchers reported in May and July that it spread inefficiently through the air between a few laboratory ferrets kept inches apart. And in cattle experiments, some cows were infected by breathing in virus-laden microscopic droplets — the sort of thing that could happen if an infected cow was coughing in close proximity to another.

Cows do, in fact, cough. The new study from Texas notes that cattle coughed during outbreaks on the farms and showed other signs of respiratory illness.

Other observations were ominous: About half of some 40 cats on one farm died suddenly at the peak of its outbreak, probably from lapping up raw milk suffused with bird flu virus.

Most people diagnosed with the bird flu have been infected from animals. In his new study, Gray saw a hint that the virus may occasionally spread from person to person, but he added that this remains conjecture. One of the two people who had antibodies worked in the farm’s cafeteria adjacent to the milking parlor — alongside farmworkers but not cattle.

“We need to find ways to have better surveillance,” he said, “so we can make informed decisions rather than decisions based on guesswork.”

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As many as 1 in 8 American adults has tried one of the GLP-1 anti-obesity drugs, but a surprising number aren’t getting their supplies from pharma giants Novo Nordisk or Eli Lilly. Up to 30 percent of the market, by some estimates, is made up of copycat versions from compounding pharmacies.

Compounding is legal, though the resulting products sometimes fall into a gray area because they’re copies of drugs under patent and are not approved by the Food and Drug Administration.

Mark Mikhael, CEO of Orlando-based Olympia Pharmaceuticals, estimates that his and other large compounders provision up to 2 million Americans each month with semaglutide, the scientific name for Novo Nordisk’s Wegovy, Ozempic and Rybelsus formulations, or tirzepatide, the active ingredient in Eli Lilly’s Zepbound and Mounjaro.

Many of the compounded drugs are produced for and sold by online pharmacies like Hims & Hers Health, Henry Meds and Ro. Others come from smaller compounding companies.

Novo Nordisk and Lilly fiercely oppose these sales and lump the compounders together with unregulated medical spas peddling bogus semaglutide. Novo Nordisk has filed at least 21 lawsuits nationwide against companies making purported copies of its drugs, said Brianna Kelley, a spokesperson for the company, and urges doctors to avoid them.

When there’s a drug shortage — the FDA has put semaglutide and tirzepatide on shortage lists since 2022 — the agency allows compounders to make it. The compounding companies get raw material for the drugs from mostly Chinese businesses that are registered and, at least in theory, inspected by the FDA.

Because the drugs are not strictly FDA-approved, those who make, prescribe or take them should exercise “an increased level of responsibility or awareness,” FDA spokesperson Amanda Hils said.

But she distinguished the compounded drugs from unregulated powders sold as “generic Ozempic” and the like, which may be contaminated or counterfeit. The agency recently warned about patients taking the wrong doses of the compounds, but it hasn’t received a disproportionate number of side effect reports linked to these drugs.

Semaglutide and tirzepatide have registered unprecedented success in weight loss. They are also showing promise against heart, kidney and liver diseases, and are being tested to treat or prevent Alzheimer’s disease and drug addiction. It’s no wonder they are in shortage.

While most compounded drugs are copies of old, cheap generics, semaglutide and tirzepatide are under patent and earn Novo Nordisk and Lilly billions of dollars a year. Compounded forms are cheaper, particularly for patients whose insurers won’t cover the branded drugs.

While the pharmaceutical giants can’t keep up with demand, they dispute the right of compounders to make and sell copies. Lilly spokesperson Kristiane Silva Bello said her company was “deeply concerned” about “serious health risks” from compounded drugs that “should not be on the market.”

Mikhael’s company is an outsourcing facility, or 503B compounding pharmacy — regulated directly by the FDA. Smaller 503A pharmacies are largely overseen by state boards of pharmacy.

The compounders are defiant, calling the diabetes and diet drugs essential products.

“If you don’t want a 503B facility to make a copy, it’s pretty simple: Don’t go short,” said Lee Rosebush, chair of a trade association for 503B pharmacies. “FDA created this system because these are necessary drugs.”

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Many people have gotten used to rolling up their sleeves for flu and covid-19 vaccines.

New immunizations are also available to combat respiratory syncytial virus, or RSV, for those at high risk of illness. Although the one-time shots reached pharmacies last year, fewer than a quarter of those 60 or older nationally had been vaccinated as of May.

Even in Florida, not many older adults have gotten the shot yet. That’s telling for a place with a high concentration of seniors because, while the virus has traditionally been thought of as a childhood ailment that affects babies, older adults can suffer from it, too. And Florida, with its humid weather, is the nation’s ground zero for RSV. Each year, infections typically start in Florida and the Southeast before spreading to other parts of the United States, according to the University of Florida’s Emerging Pathogens Institute.

The Sunshine State’s RSV season runs longer than anywhere else in the U.S., the institute said. There and in other places with tropical, humid climates, outbreaks can occur sporadically throughout most of the year, according to the institute.

That means RSV season is already underway in some parts of Florida and is coming soon to the rest of the country. Here’s what to know about it:

Q: What Is RSV?The respiratory virus is common but gained more widespread recognition amid the covid pandemic.

In medical school, many doctors were taught that RSV was an important pediatric illness but not a major issue for older adults, said William Schaffner, an infectious diseases specialist at Vanderbilt University Medical Center in Tennessee.

The pathogen typically follows a seasonal pattern and usually causes mild cold-like symptoms, but it can lead to serious problems such as pneumonia in infants and seniors. It spreads through coughing, sneezing, direct contact, and contaminated surfaces.

An estimated 58,000 to 80,000 children under age 5 are hospitalized each year due to RSV in the United States, and as many as 300 die, according to the Centers for Disease Control and Prevention. Kids at highest risk include premature infants and those younger than 2 with chronic lung disease or congenital heart disease. RSV is the leading cause of infant hospitalization in the U.S.

Outbreaks of the virus can occur in settings like day care and schools.

Federal health officials also estimate that up to 160,000 older adults are hospitalized each year due to RSV and as many as 10,000 die.

For those infected, it can be a “really nasty and long-lasting type of illness,” said Nathaniel Hupert, co-director of the Cornell Institute for Disease and Disaster Preparedness at Weill Cornell Medicine in New York City.

In Florida, each of five regions has a slightly different period of heightened transmission. For example, central Florida’s runs from August to March.

Individual cases of RSV are not reportable to Florida health officials. Only outbreaks are. For now, RSV activity is steady in the Tampa Bay counties. BayCare Health System has seen “very few hospitalizations, especially for adults at this time,” said Laura Arline, its chief quality officer.

Q: What Vaccines Are Available?In 2023, federal regulators signed off on RSV vaccines from pharmaceutical companies Pfizer and GSK. This year, they also green-lighted a shot from Moderna, which uses mRNA technology, as with its covid vaccine.

They also cleared an immunization called nirsevimab, an antibody drug, for use in babies last year.

Q: Who Is Eligible To Be Inoculated?The CDC urges anyone age 75 or older to get vaccinated. The agency also recommends that those 60 to 74 at high risk of severe illness get the jab. That includes people with chronic heart or lung conditions and patients at nursing homes or other long-term care facilities.

Unlike with flu and covid, the RSV shot is not an annual immunization. Eligible seniors should receive the vaccine once. The best time to do so is in the late summer or early fall, the federal agency said.

To protect young children, health authorities recommend that pregnant mothers get Pfizer’s vaccine sometime during weeks 32 through 36 of pregnancy — with the dose administered from September to January — or that infants be immunized with an antibody drug.

Nirsevimab, developed by pharmaceutical companies AstraZeneca and Sanofi, is recommended for infants younger than 8 months during or entering their first RSV season. Another dose is urged for some kids ages 8 to 19 months who are at high risk and entering their second RSV season.

Nationally, an estimated 24% of those 60 or older reported getting an RSV vaccine during the initial rollout, and an additional 11% said they definitely planned to get it, according to CDC survey data from May.

Considering the lack of a universal health care system, and with many people having no primary care physician, “I think that this is a pretty impressive showing,” said Hupert of the Cornell Institute for Disease and Disaster Preparedness.

Q: How Much Do the Shots Cost?The list price of GSK’s vaccine is $280 per dose. Pfizer’s is $295 per dose. Moderna’s retails for about the same, according to health care company GoodRx.

The amount people pay out-of-pocket is set by their insurance coverage’s prescription drug plan.

Under the Inflation Reduction Act of 2022, adults enrolled in Medicare Part D drug plans can receive federally recommended vaccines free, said Centers for Medicare & Medicaid Services spokesperson Lorraine Ryan in an email. If someone with Part D is having trouble obtaining RSV vaccine coverage, they should contact their plan or call 1-800-MEDICARE (800-633-4227) for assistance.

Q: Where Are the Vaccines Offered?Doctor’s offices might stock them, but pharmacies or drugstores administered the majority of shots during the first season of availability.

Schaffner, of the Vanderbilt University Medical Center, said that’s because the vaccines are covered under Medicare Part D — not Part B. Many physicians “simply don’t deal with” Part D-covered immunizations, he said. Pharmacies do, though.

Q: Why Have So Few People Been Immunized?Federal health officials last year said all adults 60 or older should have the option of getting a vaccine after discussing it with a health care provider. This is known as a “shared clinical decision-making” recommendation and has since been replaced with the latest guidance for those age 60 and beyond.

Shared clinical decision-making recommendations create financial and logistical barriers that can hinder vaccine uptake, according to the Champions for Vaccine Education, Equity + Progress, a coalition of patient, provider, and public health organizations.

Many physicians didn’t know about the shots during the first season of availability and weren’t convinced of their importance, so further education was needed, Schaffner added. A lot were cautious, too, he said, because of reports of a rare nervous system disorder, Guillain-Barré syndrome, occurring in a small share of people post-vaccination.

Advisers to the CDC concluded that the estimated benefits of getting an RSV vaccine outweigh the risks.

“Let’s see if we can do better this second year,” Schaffner said.

This article was produced through a partnership between KFF Health News and the Tampa Bay Times.

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

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What if the first responder on the scene of a cardiac arrest were a drone carrying an automated external defibrillator?

When every second counts, public safety professionals are increasingly eyeing drones — which can fly 60 miles an hour and don’t get stuck in traffic — to deliver help faster than an ambulance or EMT.

Starting in September, 911 callers in Clemmons, N.C., may see a drone winging its way to those suffering a cardiac arrest. Under a pilot program operated jointly by the Forsyth County Sheriff’s Office, local emergency services, the Clinical Research Institute at Duke University and drone consulting firm Hovecon, drone pilots from the sheriff’s department will monitor 911 calls and dispatch drones.

The sheriff’s office has approval from the Federal Aviation Administration to operate within a 2-mile radius of the launch site, beyond the visual line of sight. Upon arrival, a drone will hover 125 feet above the caller’s location and lower an AED complete with verbal instructions.

“We’ve never been able to move the needle for cardiac arrest in private settings, and this technology could meet that need,” said Monique Anderson Starks, a cardiologist and an associate professor of medicine at Duke, who is leading the program. It will eventually operate six drones at six sites in Forsyth County and James City County, Va., that can deliver AEDs, she said.

It’s a critical problem. More than 356,000 people suffer cardiac arrests outside of a hospital setting every year in the United States. About 90 percent die, because they don’t get immediate help. Every minute that passes without medical intervention decreases survival odds by 10 percent.

In the United States, emergency medical services take an average of seven minutes to arrive after a 911 call, one study found, but the time varies considerably by region.

A Swedish study published in the Lancet in 2023 compared the cardiac arrest response times between drones and ambulances in 58 deployments in an area of about 200,000 people. It found that drones beat the ambulances to the scene two-thirds of the time, by a median of three minutes and 14 seconds.

Drones are being tested in other types of medical emergencies, too. In Florida, Tampa General Hospital, Manatee County and Archer First Response Systems began a program in May to deliver not only AEDs by drone but also tourniquets and Narcan, the nasal spray that can reverse an opioid overdose. The program currently operates in a 1.5-mile radius, within visual line of sight.

In New York City, the police department plans to use drones to drop emergency flotation devices to struggling swimmers at local beaches. Emergency rescuers elsewhere have used drones to locate people who wander away from nursing homes.

One hurdle to these programs spreading has been the FAA’s usual requirement that these airborne devices be used within their operators’ visual line of sight. In May, when Congress passed the FAA reauthorization bill, it gave the FAA four months to issue a proposed rule spelling out requirements for operating beyond the visual line of sight.

“The FAA is focused on developing standard rules to make [beyond visual line of sight] operations routine, scalable and economically viable,” said Rick Breitenfeldt, an FAA spokesman.

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One owns a for-profit insurer, a venture capital company, and for-profit hospitals in Italy and Kazakhstan; it has just acquired its fourth for-profit hospital in Ireland. Another owns one of the largest for-profit hospitals in London, is partnering to build a massive training facility for a professional basketball team, and has launched and financed 80 for-profit start-ups. Another partners with a wellness spa where rooms cost $4,000 a night and co-invests with “leading private equity firms.”

Do these sound like charities?

These diversified businesses are, in fact, some of the country’s largest nonprofit hospital systems. And they have somehow managed to keep myriad for-profit enterprises under their nonprofit umbrella — a status that means they pay little or no taxes, float bonds at preferred rates, and gain numerous other financial advantages.

Through legal maneuvering, regulatory neglect, and a large dollop of lobbying, they have remained tax-exempt charities, classified as 501(c)(3)s.

“Hospitals are some of the biggest businesses in the U.S. — nonprofit in name only,” said Martin Gaynor, an economics and public policy professor at Carnegie Mellon University. “They realized they could own for-profit businesses and keep their not-for-profit status. So the parking lot is for-profit; the laundry service is for-profit; they open up for-profit entities in other countries that are expressly for making money. Great work if you can get it.”

Many universities’ most robust income streams come from their technically nonprofit hospitals. At Stanford University, 62% of operating revenue in fiscal 2023 was from health services; at the University of Chicago, patient services brought in 49% of operating revenue in fiscal 2022.

To be sure, many hospitals’ major source of income is still likely to be pricey patient care. Because they are nonprofit and therefore, by definition, can’t show that thing called “profit,” excess earnings are called “operating surpluses.” Meanwhile, some nonprofit hospitals, particularly in rural areas and inner cities, struggle to stay afloat because they depend heavily on lower payments from Medicaid and Medicare and have no alternative income streams.

But investments are making “a bigger and bigger difference” in the bottom line of many big systems, said Ge Bai, a professor of health care accounting at the Johns Hopkins University Bloomberg School of Public Health. Investment income helped Cleveland Clinic overcome the deficit incurred during the pandemic.

When many U.S. hospitals were founded over the past two centuries, mostly by religious groups, they were accorded nonprofit status for doling out free care during an era in which fewer people had insurance and bills were modest. The institutions operated on razor-thin margins. But as more Americans gained insurance and medical treatments became more effective — and more expensive — there was money to be made.

Not-for-profit hospitals merged with one another, pursuing economies of scale, like joint purchasing of linens and surgical supplies. Then, in this century, they also began acquiring parts of the health care systems that had long been for-profit, such as doctors’ groups, as well as imaging and surgery centers. That raised some legal eyebrows — how could a nonprofit simply acquire a for-profit? — but regulators and the IRS let it ride.

And in recent years, partnerships with, and ownership of, profit-making ventures have strayed further and further afield from the purported charitable health care mission in their community.

“When I first encountered it, I was dumbfounded — I said, ‘This not charitable,’” said Michael West, an attorney and senior vice president of the New York Council of Nonprofits. “I’ve long questioned why these institutions get away with it. I just don’t see how it’s compliant with the IRS tax code.” West also pointed out that they don’t act like charities: “I mean, everyone knows someone with an outstanding $15,000 bill they can’t pay.”

Hospitals get their tax breaks for providing “charity care and community benefit.” But how much charity care is enough and, more important, what sort of activities count as “community benefit” and how to value them? IRS guidance released this year remains fuzzy on the issue.

Academics who study the subject have consistently found the value of many hospitals’ good work pales in comparison with the value of their tax breaks. Studies have shown that generally nonprofit and for-profit hospitals spend about the same portion of their expenses on the charity care component.

Here are some things listed as “community benefit” on hospital systems’ 990 tax forms: creating jobs; building energy-efficient facilities; hiring minority- or women-owned contractors; upgrading parks with lighting and comfortable seating; creating healing gardens and spas for patients.

All good works, to be sure, but health care?

What’s more, to justify engaging in for-profit business while maintaining their not-for-profit status, hospitals must connect the business revenue to that mission. Otherwise, they pay an unrelated business income tax.

“Their CEOs — many from the corporate world — spout drivel and turn somersaults to make the case,” said Lawton Burns, a management professor at the University of Pennsylvania’s Wharton School. “They do a lot of profitable stuff — they’re very clever and entrepreneurial.”

The truth is that a number of not-for-profit hospitals have become wealthy diversified business organizations. The most visible manifestation of that is outsize executive compensation at many of the country’s big health systems. Seven of the 10 most highly paid nonprofit CEOs in the United States run hospitals and are paid millions, sometimes tens of millions, of dollars annually. The CEOs of the Gates and Ford foundations make far less, just a bit over $1 million.

When challenged about the generous pay packages — as they often are — hospitals respond that running a hospital is a complicated business, that pharmaceutical and insurance execs make much more. Also, board compensation committees determine the payout, considering salaries at comparable institutions as well as the hospital’s financial performance.

One obvious reason for the regulatory tolerance is that hospital systems are major employers — the largest in many states (including Massachusetts, Pennsylvania, Minnesota, Arizona, and Delaware). They are big-time lobbying forces and major donors in Washington and in state capitals.

But some patients have had enough: In a suit brought by a local school board, a judge last year declared that four Pennsylvania hospitals in the Tower Health system had to pay property taxes because its executive pay was “eye popping” and it demonstrated “profit motives through actions such as charging management fees from its hospitals.”

A 2020 Government Accountability Office report chided the IRS for its lack of vigilance in reviewing nonprofit hospitals’ community benefit and recommended ways to “improve IRS oversight.” A follow-up GAO report to Congress in 2023 said, “IRS officials told us that the agency had not revoked a hospital’s tax-exempt status for failing to provide sufficient community benefits in the previous 10 years” and recommended that Congress lay out more specific standards. The IRS declined to comment for this column.

Attorneys general, who regulate charity at the state level, could also get involved. But, in practice, “there is zero accountability,” West said. “Most nonprofits live in fear of the AG. Not hospitals.”

Today’s big hospital systems do miraculous, lifesaving stuff. But they are not channeling Mother Teresa. Maybe it’s time to end the community benefit charade for those that exploit it, and have these big businesses pay at least some tax. Communities could then use those dollars in ways that directly benefit residents’ health.

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When Bristeria Clark went into labor with her son in 2015, her contractions were steady at first. Then, they stalled. Her cervix stopped dilating. After a few hours, doctors at Phoebe Putney Memorial Hospital in Albany, Georgia, prepped Clark for an emergency cesarean section.

It wasn’t the vaginal birth Clark had hoped for during her pregnancy.

“I was freaking out. That was my first child. Like, of course you don’t plan that,” she said. “I just remember the gas pulling up to my face and I ended up going to sleep.”

She remembered feeling a rush of relief when she woke to see that her baby boy was healthy.

Clark, a 33-year-old nursing student who also works full-time in county government, had another C-section when her second child was born in 2020. This time, the cesarean was planned.

Clark said she’s grateful the physicians and nurses who delivered both her babies were kind and caring during her labor and delivery. But looking back, she said, she wishes she had had a doula for one-on-one support through pregnancy, childbirth, and the postpartum period. Now she wants to give other women the option she didn’t have.

Clark is a member of Morehouse School of Medicine’s first class of rural doulas, called Perinatal Patient Navigators.

The program recently graduated a dozen participants, all Black women from southwestern Georgia. They have completed more than five months of training and are scheduled to begin working with pregnant and postpartum patients this year.

“We’re developing a workforce that’s going to be providing the support that Black women and birthing people need,” Natalie Hernandez-Green, an associate professor of obstetrics and gynecology at Morehouse School of Medicine, said at the doula commencement ceremony in Albany, Georgia.

Albany is Morehouse School of Medicine’s second Perinatal Patient Navigator program site. The first has been up and running in Atlanta since training began in the fall of 2022.

Georgia has one of the highest rates of maternal mortality in the country, according to an analysis by KFF, a health information nonprofit that includes KFF Health News. And Black Georgians are more than twice as likely as white Georgians to die of causes related to pregnancy.

“It doesn’t matter whether you’re rich or poor. Black women are dying at [an] alarming rate from pregnancy-related complications,” said Hernandez-Green, who is also executive director of the Center for Maternal Health Equity at Morehouse School of Medicine. “And we’re about to change that one person at a time.”

The presence of a doula, along with regular nursing care, is associated with improved labor and delivery outcomes, reduced stress, and higher rates of patient satisfaction, according to the American College of Obstetricians and Gynecologists.

Multiple studies also link doulas to fewer expensive childbirth interventions, including cesarean births.

Doulas are not medical professionals. They are trained to offer education about the pregnancy and postpartum periods, to guide patients through the health care system, and to provide emotional and physical support before, during, and after childbirth.

Morehouse School of Medicine’s program is among a growing number of similar efforts being introduced across the country as more communities look to doulas to help address maternal mortality and poor maternal health outcomes, particularly for Black women and other women of color.

Now that she has graduated, Clark said she’s looking forward to helping other women in her community as a doula. “To be that person that would be there for my clients, treat them like a sister or like a mother, in a sense of just treating them with utmost respect,” she said. “The ultimate goal is to make them feel comfortable and let them know ‘I’m here to support you.’” Her training has inspired her to become an advocate for maternal health issues in southwestern Georgia.

Grants fund Morehouse School of Medicine’s doula program, which costs $350,000 a year to operate. Graduates are given a $2,000 training stipend and the program places five graduates with health care providers in southwestern Georgia. Grant money also pays the doulas’ salaries for one year.

“It’s not sustainable if you’re chasing the next grant to fund it,” said Rachel Hardeman, a professor of health and racial equity at the University of Minnesota School of Public Health.

Thirteen states cover doulas through Medicaid, according to the Georgetown University Center for Children and Families.

Hardeman and others have found that when Medicaid programs cover doula care, states save millions of dollars in health care costs. “We were able to calculate the return on investment if Medicaid decided to reimburse doulas for pregnant people who are Medicaid beneficiaries,” she said.

That’s because doulas can help reduce the number of expensive medical interventions during and after birth, and improving delivery outcomes, including reduced cesarean sections.

Doulas can even reduce the likelihood of preterm birth.

“An infant that is born at a very, very early gestational age is going to require a great deal of resources and interventions to ensure that they survive and then continue to thrive,” Hardeman said.

There is growing demand for doula services in Georgia, said Fowzio Jama, director of research for Healthy Mothers, Healthy Babies Coalition of Georgia. Her group recently completed a pilot study that offered doula services to about 170 Georgians covered under Medicaid. “We had a waitlist of over 200 clients and we wanted to give them the support that they needed, but we just couldn’t with the given resources that we had,” Jama said.

Doula services can cost hundreds or thousands of dollars out-of-pocket, making it too expensive for many low-income people, rural communities, and communities of color, many of which suffer from shortages in maternity care, according to the March of Dimes.

The Healthy Mothers, Healthy Babies study found that matching high-risk patients with doulas — particularly doulas from similar racial and ethnic backgrounds — had a positive effect on patients.

“There was a reduced use of pitocin to induce labor. We saw fewer requests for pain medication. And with our infants, only 6% were low birth weight,” Jama said.

Still, she and others acknowledge that doulas alone can’t fix the problem of high maternal mortality and morbidity rates.

States, including Georgia, need to do more to bring comprehensive maternity care to communities that need more options, Hardeman said.

“I think it’s important to understand that doulas are not going to save us, and we should not put that expectation on them. Doulas are a tool,” she said. “They are a piece of the puzzle that is helping to impact a really, really complex issue.”

In the meantime, Joan Anderson, 55, said she’s excited to get to work supporting patients, especially from rural areas around Albany.

“I feel like I’m equipped to go out and be that voice, be that person that our community needs so bad,” said Anderson, a graduate of the Morehouse School of Medicine doula program. “I am encouraged to know that I will be joining in that mission, that fight for us, as far as maternal health is concerned.”

Anderson said that someday she wants to open a birthing center to provide maternity care. “We do not have one here in southwest Georgia at all,” Anderson said.

In addition to providing support during and after childbirth, Anderson and her fellow graduates are trained to assess their patients’ needs and connect them to services such as food assistance, mental health care, transportation to prenatal appointments, and breastfeeding assistance.

Their work is likely to have ripple effects across a largely rural corner of Georgia, said Sherrell Byrd, who co-founded and directs SOWEGA Rising, a nonprofit organization in southwestern Georgia.

“So many of the graduates are part of church networks, they are part of community organizations, some of them are our government workers. They’re very connected,” Byrd said. “And I think that connectedness is what’s going to help them be successful moving forward.”

This reporting is part of a fellowship with the Association of Health Care Journalists supported by The Commonwealth Fund. It comes from a partnership that includes WABE, 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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Céline Gounder, KFF Health News’ senior fellow and editor-at-large for public health, discussed the spike in covid cases across the U.S. on CBS’ “CBS Mornings” on July 24.

• Click here to watch Gounder on “CBS Mornings”
• Click here to read Tarena Lofton’s “Covid Is Still With Us, but the Guidance Has Changed. Here’s What to Know if You’re Exposed.”

KFF Health News contributor Andy Miller discussed health care affordability on WUGA’s “The Georgia Health Report” on July 19.

• Click here to hear Miller on “The Georgia Health Report”
• Read Judith Graham’s “Lack of Affordability Tops Older Americans’ List of Health Care Worries”

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 Centers for Disease Control and Prevention says a glitch in its bird flu test hasn’t harmed the agency’s outbreak response. But it has ignited scrutiny of its go-it-alone approach in testing for emerging pathogens.

The agency has quietly worked since April to resolve a nagging issue with the test it developed, even as the virus swept through dairy farms and chicken houses across the country and infected at least 13 farmworkers this year.

At a congressional hearing July 23, Rep. Brett Guthrie (R-Ky.) asked about the issue. “Boy, that rings of 2020,” he said, referring to when the nation was caught off guard by the covid-19 pandemic, in part because of dysfunctional tests made by the CDC. Demetre Daskalakis, director of the CDC’s National Center for Immunization and Respiratory Diseases, responded that the agency rapidly developed a workaround that makes its bird flu test reliable.

“The tests are 100% usable,” he later told KFF Health News, adding that the FDA studied the tests and came to the same conclusion. The imperfect tests, which have a faulty element that sometimes requires testing a sample again, will be replaced soon. He added, “We have made sure that we’re offering a high-quality product.”

Still, some researchers were unnerved by the news coming four months after the government declared a worrisome bird flu outbreak among cattle. The CDC’s test is the only one available for clinical use. Some researchers say its flaws, though manageable, underscore the risk of relying on a single entity for testing.

The problem came to light in April as the agency prepared to distribute its test to about 100 public health labs around the country. CDC officials detected the issue through a quality control system put in place after the covid test catastrophe of 2020.

Daskalakis said the CDC’s original test design was fine, but a flaw emerged when a company contracted by the agency manufactured the tests in bulk. In these tests, one of two components that recognize proteins called H5 in the H5N1 bird flu virus was unreliable, eliminating an important safeguard. By targeting the same protein twice, tests have a built-in backup in case one part fails.

The agency developed a fix to ensure a reliable result: If only one of the two parts detected H5, the test was considered inconclusive and would be run again. With the FDA’s blessing, the CDC distributed the tests — with workaround instructions — to public health labs.

Kelly Wroblewski, director of infectious diseases at the Association of Public Health Laboratories, said the results of the tests have not been ambiguous, and there is no need to discard the tests.

Still, the agency has asked a different manufacturer to remake the faulty component so that 1.2 million improved tests will be available soon, Daskalakis said. Some of the updated tests are already in stock at the CDC, but the FDA hasn’t yet signed off on their use. Daskalakis declined to name the manufacturers.

Meanwhile, the outbreak has grown. Farmworkers continue to lack information about the virus and gear to protect them from it. Rural clinics may miss cases if they don’t catch a person’s connection to a farm and notify health officials rather than their usual diagnostic testing laboratories.

Those clinical labs remain unauthorized to test for the bird flu. Several of those labs have spent months working through analyses and red tape so that they can run the CDC’s tests. As part of the licensing process, the CDC alerted them to the workaround with the current test, too.

But outside select circles, the news was largely overlooked. “I’m totally surprised by this,” Alex Greninger, assistant director of the University of Washington Clinical Virology Laboratory, told KFF Health News this week. Greninger’s lab is developing its own test and has been trying to obtain CDC test kits to evaluate.

“It’s not a red alarm,” he said, but he’s worried that as the CDC and the FDA spend months developing and evaluating an updated test, the only one available relies on a single component. If the genetic code underlying that fragment of the H5 protein mutates, the test could give false results.

It’s not uncommon for academic and commercial diagnostic labs to make mistakes and catch them during quality control checks, as the CDC did. Still, this isn’t the agency’s first mishap. In 2016, well before the covid debacle, CDC officials for months directed public health labs to use a Zika test that failed about a third of the time.

The CDC caught and worked to remediate the situation far more quickly and effectively in this case. Nonetheless, the mishap raises concern. Michael Mina, chief science officer of the telemedicine company eMed.com, said diagnostic companies may be better suited to the task.

“It’s a reminder that CDC is not a robust manufacturer of tests” and lacks the resources that industry can marshal for their production, Mina said. “We do not ask CDC to make vaccines and pharmaceuticals, and we do not ask the Pentagon to manufacture missiles.”

The CDC has licensed its updated test design to at least seven clinical diagnostic labs. Such labs are the foundation of testing in the U.S. But none have FDA clearance to use them.

Diagnostic labs are developing their own tests, too. But that has been slow-going. One reason is the lack of guaranteed sales. Another is regulatory uncertainty. Recent FDA guidance could make it harder for nongovernmental laboratories to issue new tests in the early phase of pandemics, said Susan Van Meter, president of the American Clinical Laboratory Association, in a July 1 letter to the FDA.

Transparency is also critical, scientists said. Benjamin Pinsky, medical director of the clinical virology laboratory at Stanford University, said as a public agency the CDC should make its protocol — its recipe for making the test — easily accessible online.

The World Health Organization does so for its bird flu tests, and with that information in hand, Pinsky’s lab has developed an H5 bird flu test suited to the strain circulating this year in the U.S. The lab published its approach this month but doesn’t have FDA authorization for its broad use.

The CDC’s test recipe is available in a published patent, Daskalakis said.

“We have made sure that tests are out there, and that they work,” he added.

As the CDC came under fire at the July 23 congressional hearing, Daniel Jernigan, director of the CDC’s National Center for Emerging and Zoonotic Infectious Diseases, noted that testing is just one tool. The agency needs money for another promising area — looking for the virus in wastewater. Its current program uses supplemental funds, he said: “It is not in the current budget and will go away without additional funding.”

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 National Education Association, the nation’s largest union, is threatening to cut off health insurance to about 300 Washington, D.C.-based workers on Aug. 1 in an effort to end a bitter contract dispute.

It’s a tactic some private employers have used as leverage against unionized workers that has drawn scrutiny from congressional Democrats and is prohibited for state employers in California. Experts on labor law say they’ve never seen a union make the move against its own workers.

“This is like a man-bites-dog situation where the union is now in a position as the employer,” said Paul Clark, a professor of labor and employment relations at Penn State University. “It’s not a good look for a union.”

NEA workers with pressing health needs are worried but say they won’t fold. Joye Mercer Barksdale, a writer on the NEA’s government relations team, said she needs coverage for a medical procedure to address atrial fibrillation, a cardiac disorder. “This is insane for the NEA to use our health benefits as a bargaining chip,” she said.

But Barksdale said the threat isn’t enough to force her to agree to an unacceptable contract. “I am not ready to give in,” she said.

The NEA Staff Organization, the union representing workers at the NEA’s headquarters, launched a strike on July 5 in Philadelphia, during the union’s annual delegate assembly. It was its second walkout this summer as the two parties negotiate a new contract, navigating sticking points such as wages and remote work.

In response, the NEA ended the conference early. President Joe Biden was supposed to speak at the event but withdrew, refusing to cross the picket line. The NEA on July 24 endorsed Kamala Harris for president.

On July 8, the day after the conference had been scheduled to end, the NEA locked out workers. In a letter the day before, the NEA informed its unionized workers that they would not be paid, effective immediately, and their health benefits would expire at the end of July unless a new deal were reached.

“NEA cannot allow NEASO to act again in a way that will bring such lasting harm to our members and our organization,” Kim Anderson, the NEA’s executive director, wrote in the letter, obtained by KFF Health News. “We are, and have always been, committed both to our union values and to the importance of conducting ourselves as a model employer.”

Democrats in Congress, including Sens. Sherrod Brown of Ohio and Bob Casey of Pennsylvania, introduced legislation last year to protect striking workers from losing their health benefits, after several large companies, including General Motors, John Deere, RTX (formerly Raytheon Technologies), and the maker of Kellogg’s cereals, threatened to or did cut off coverage during labor disputes.

“Workers shouldn’t have to choose between their family’s health and a fair contract,” Brown said in a statement to KFF Health News.

The legislation was endorsed by large labor unions including the Service Employees International Union and United Steelworkers, according to a press release from Brown’s office. The NEA wasn’t among them.

“This tactic is immoral, and it should be illegal,” United Steelworkers’ president at the time, Thomas Conway, said in the release.

Officials at the NEA, which represents teachers and other administrators, declined an interview request. In a statement, the organization’s president, Becky Pringle, said “we are making every effort to reach an agreement as quickly as possible” with its staff union.

“As union leaders who have been on strike, we recognize the significance and impact of these important decisions on a personal and family level. We truly value our employees and look forward to continued collaboration with NEASO to develop a new contract that benefits us all,” she said.

Kate Hilts, a digital strategist who works for the NEA, said she fears losing her coverage will leave her unable to afford treatment for a rare autoimmune disease that attacks her kidneys. Her next treatment was slated for August.

“I wake up every day and can’t believe this is happening,” she said. “You would expect this from an employer that is antiworker or has a terrible labor record, but I am totally flabbergasted that a labor union would do this that bills itself as pro-worker, pro-family, pro-education, and pro-children.”

The NEA staff union has filed multiple charges with the National Labor Relations Board this year, including allegations that the NEA withheld holiday overtime pay and failed to provide information on the outsourcing of millions of dollars in bargaining unit work.

California is one of the only states that protect striking workers from losing health coverage. The state legislature passed a law in 2021 that blocks the tactic from being used against public employees and another law in 2022 that allows any striking workers who lose their insurance to immediately get heavily discounted coverage through the state’s Affordable Care Act marketplace.

If they remain locked out, the NEA workers would be eligible for coverage under COBRA, a federal program that allows people who are fired or laid off to maintain their employer-sponsored insurance for 18 months.

But the coverage can be a financial hardship, as individuals often must pay the entire cost of their insurance premiums, plus a 2% administrative fee.

Another option for workers would be coverage through the Affordable Care Act marketplace, though that also could be costly. And it may be unclear how soon that coverage would begin or whether insurers would cover their existing doctors.

“I’m hoping the NEA will be so ashamed of what they are doing that, at the very least, they will not take away our health benefits,” Barksdale 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 HostJulie RovnerKFF 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.As Vice President Kamala Harris appears poised to become the Democratic Party’s presidential nominee, health policy in general and reproductive health issues in particular are likely to have a higher profile. Harris has long been the Biden administration’s point person on abortion rights and reproductive health and was active on other health issues while serving as California’s attorney general.

Meanwhile, Congress is back for a brief session between presidential conventions, but efforts in the GOP-led House to pass the annual spending bills, due by Oct. 1, have run into the usual roadblocks over abortion-related issues.

This week’s panelists are Julie Rovner of KFF Health News, Stephanie Armour of KFF Health News, Rachel Cohrs Zhang of Stat, and Alice Miranda Ollstein of Politico.

PanelistsStephanie ArmourKFF Health News@StephArmour1 Read Stephanie's stories.Rachel Cohrs ZhangStat News@rachelcohrs Read Rachel's stories.Alice Miranda OllsteinPolitico@AliceOllstein Read Alice's stories.Among the takeaways from this week’s episode:

• President Joe Biden’s decision to drop out of the presidential race has turned attention to his likely successor on the Democratic ticket, Vice President Kamala Harris. At this late hour in the campaign, she is expected to adopt Biden’s health policies, though many anticipate she’ll take a firmer stance on restoring Roe v. Wade. And while abortion rights supporters are enthusiastic about Harris’ candidacy, opponents are eager to frame her views as extreme.
• As he transitions from incumbent candidate to outgoing president, Biden is working to frame his legacy, including on health policy. The president has expressed pride that his signature domestic achievement, the Inflation Reduction Act, took on the pharmaceutical industry, including by forcing the makers of the most expensive drugs into negotiations with Medicare. Yet, as with the Affordable Care Act’s delayed implementation and results, most Americans have yet to see the IRA’s potential effect on drug prices.
• Lawmakers continue to be hung up on federal government spending, leaving appropriations work undone as they prepare to leave for summer recess. Fights over abortion are, once again, gumming up the works.
• In abortion news, Iowa’s six-week limit is scheduled to take effect next week, causing rippling problems of abortion access throughout the region. In Louisiana, which added the two drugs used in medication abortions to its list of controlled substances, doctors are having difficulty using the pills for other indications. And doctors who oppose abortion are pushing higher-risk procedures, like cesarean sections, in lieu of pregnancy termination when the mother’s life is in danger — as states with strict bans, like Texas and Louisiana, are reporting a rise in the use of surgeries, including hysterectomies, to end pregnancies.
• The Government Accountability Office reports that many states incorrectly removed hundreds of thousands of eligible people from the Medicaid rolls during the “unwinding” of the covid-19 public health emergency’s coverage protections. The Biden administration has been reluctant to call out those states publicly in an attempt to keep the process as apolitical as possible.

Also this week, Rovner interviews Anthony Wright, the new executive director of the consumer health advocacy group Families USA. Wright spent the past two decades in California, working with, among others, now-Vice President Kamala Harris on various health issues.

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

Julie Rovner: NPR’s “A Study Finds That Dogs Can Smell Your Stress — And Make Decisions Accordingly,” by Rachel Treisman.

Alice Miranda Ollstein: Stat’s “A Pricey Gilead HIV Drug Could Be Made for Dramatically Less Than the Company Charges,” by Ed Silverman, and Politico’s “Federal HIV Program Set To Wind Down,” by Alice Miranda Ollstein and David Lim.

Stephanie Armour: Vox’s “Free Medical School Won’t Solve the Doctor Shortage,” by Dylan Scott.

Rachel Cohrs Zhang: Stat’s “How UnitedHealth Harnesses Its Physician Empire To Squeeze Profits out of Patients,” by Bob Herman, Tara Bannow, Casey Ross, and Lizzy Lawrence.

Also mentioned on this week’s podcast:

• States Newsroom’s “Anti-Abortion Researchers Back Riskier Procedures When Pregnancy Termination Is Needed, Experts Say,” by Sofia Resnick.
• KFF Health News’ “Louisiana Reclassifies Drugs Used in Abortions as Controlled Dangerous Substances,” by Rosemary Westwood, WWNO.
• The New York Times’ “Biden and Georgia Are Waging a Fight Over Medicaid and the Future of Obamacare,” by Noah Weiland.

CreditsFrancis YingAudio producerEmmarie Huetteman Editor To hear all our podcasts, click here.

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

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

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Not so long ago, Bonner General Health, the hospital in Sandpoint, Idaho, had four OB/GYNs on staff, who treated patients from multiple rural counties.

That was before Idaho’s near-total abortion ban went into effect almost two years ago, criminalizing most abortions. All four of Bonner’s OB/GYNs left by last summer, some citing fears that the state’s ban exposed them to legal peril for doing their jobs.

The exodus forced Bonner General to shutter its labor and delivery unit and sent patients scrambling to seek new providers more than 40 miles away in Coeur d’Alene or Post Falls, or across the state border to Spokane, Wash. It has made Sandpoint a “double desert,” meaning it lacks access to both maternity care and abortion services.

One patient, Jonell Anderson, was referred to an OB-GYN in Coeur d’Alene, roughly an hour’s drive from Sandpoint, after an ultrasound showed a mass growing in her uterus. Anderson made multiple trips to the out-of-town provider. Previously, she would have found that care close to home.

The experience isn’t limited to this small Idaho town.

A 2023 analysis by ABC News and Boston Children’s Hospital found that more than 1.7 million women of reproductive age in the United States live in a “double desert.” About 3.7 million women live in counties with no access to abortion and little to no maternity care.

Texas, Mississippi and Kentucky have the highest numbers of women of reproductive age living in double deserts, according to the analysis.

Amelia Huntsberger, one of the OB/GYNs who chose to leave Sandpoint — despite having practiced there for a decade — did so because she felt she couldn’t provide the care her patients needed under a law as strict as Idaho’s.

The growing provider shortages in rural states affect not only pregnant and postpartum women, but all women, said Usha Ranji, an associate director for Women’s Health Policy at KFF, a health information nonprofit that includes KFF Health News.

“Pregnancy is obviously a very intense period of focus, but people need access to this care before, during and after, and outside of pregnancy,” Ranji said.

The problem is expected to worsen.

In Idaho, the number of applicants to fill spots left by departing doctors has “absolutely plummeted,” said Susie Keller, CEO of the Idaho Medical Association.

“We are witnessing the dismantling of our health system,” she said.

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

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. — Los californianos que trabajan en espacios interiores están recibiendo protecciones inmediatas contra el calor extremo, cuando el estado enfrenta temperaturas de tres dígitos.

California ha tenido estándares para proteger a los trabajadores al aire libre del calor desde 2005, pero el estado anunció el miércoles 24 de julio que ya había acelerado la revisión de un conjunto de reglas para los trabajadores en interiores.

La Junta de Normas de Seguridad y Salud Ocupacional del estado aprobó la regulación en junio, pero necesitaba ser evaluada para su cumplimiento legal.

“Esta regulación proporciona protecciones para los trabajadores en todo California y ayuda a preparar a los empleadores para enfrentar los desafíos de las temperaturas en aumento en ambientes interiores”, dijo Debra Lee, jefa de la División de Seguridad y Salud Ocupacional estatal.

California es uno de los pocos estados que están actuando frente a los crecientes impactos del cambio climático y el calor extremo con estándares de seguridad para los trabajadores.

A principios de este mes, la administración Biden propuso reglas federales para proteger a los trabajadores en interiores y exteriores, ya que el calor extremo, el asesino número 1 relacionado con el clima número en el país, se vuelve aún más peligroso.

Los estándares de California requieren que los lugares de trabajo en interiores se mantengan por debajo de los 87 grados Fahrenheit cuando hay empleados presentes, y por debajo de 82 grados en lugares donde los trabajadores usan ropa protectora o están expuestos al calor radiante, como hornos.

Los sitios de trabajo que no tienen aire acondicionado pueden usar ventiladores, nebulizadores y otros métodos para bajar la temperatura.

Las reglas permiten alternativas para los negocios si no pueden enfriar sus espacios lo suficiente. En esos casos, los empleadores deben proporcionar a los trabajadores agua, descansos, áreas donde puedan refrescarse, chalecos refrigerantes u otros medios para evitar el sobrecalentamiento.

Pero incluso con alternativas, las empresas están preocupadas por el costo de cumplir con la regulación, especialmente las pequeñas empresas que no son dueñas de sus locales o están en edificios antiguos, dijo Robert Moutrie, defensor de políticas senior en la Cámara de Comercio de California.

“La respuesta más simple a esta regulación es el aire acondicionado, y eso es una inversión costosa”, dijo Moutrie. “Si eres una pequeña empresa y no eres dueño de tu estructura, no puedes hacer cambios como crear un nuevo espacio para refrescarte”.

Las reglas se han estado desarrollando desde 2016, retrasadas, en parte, por la pandemia de covid. La Junta de Seguridad Laboral pidió que las regulaciones se aceleraran. Una revisión estándar habría retrasado la entrada en vigencia de la regulación hasta el otoño, dejando a los trabajadores en gran medida desprotegidos del calor del verano.

La regulación se aplica a la mayoría de los lugares de trabajo en interiores, incluidas aulas e incluso vehículos de reparto. Pero los reguladores estatales dejaron fuera a las prisiones y las instalaciones correccionales locales después que la administración del gobernador Gavin Newsom proyectara que podría costar miles de millones de dólares al Departamento de Correcciones y Rehabilitación de California implementarlas.

La junta tiene la intención de redactar una regulación separada para los miles de trabajadores en las 33 prisiones estatales, campamentos de conservación y cárceles locales del estado. Eso podría llevar un año, si no más.

En 2021, el Departamento de Salud y Servicios Humanos (HHS) informó que ocurrieron 1,602 muertes relacionadas con el calor a nivel nacional, lo que probablemente sea un subregistro porque los proveedores de atención médica no están obligados a informarlas.

En 2023, el HHS informó 2,302 muertes relacionadas con el calor. No está claro cuántas de estas muertes estuvieron vinculadas al trabajo, ya sea en interiores o exteriores.

Mientras tanto, en junio, las temperaturas globales registraron récords históricos por decimotercer mes consecutivo.

“Este es realmente uno de los mayores problemas de seguridad que vemos que los trabajadores experimentan en California en muchas industrias”, dijo Tim Shadix, director legal del Warehouse Worker Resource Center, que abogó por las protecciones. “Y el problema solo está empeorando con el cambio climático y los veranos más calurosos”.

Esta historia fue producida por KFF Health News, que publica California Healthline, un servicio editorialmente independiente de la California Health Care Foundation.

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Montana’s proposal to increase oversight is part of a national trend by states to ensure nonprofit hospitals act as charitable organizations as they claim tax-exempt status. LISTEN here:

https://kffhealthnews.org/wp-content/uploads/sites/2/2024/07/Community-Benefits-for-KFF.mp3The proposal comes some four years after a state audit found shortcomings in the health department’s oversight. The rules largely mirror federal requirements that national health policy analysts said have yet to lead to any meaningful enforcement.

“What is being proposed in Montana doesn’t really move the needle,” said Kevin Barnett, a researcher with the California-based nonprofit Public Health Institute who has studied hospital community benefits for decades. “It kicks the can down the road to say ‘we’ll consider this another day.’”

State officials would now be paying more attention, he said, but the impact depends on what they do with the information.

Montana’s plan is part of a national trend by states to try to cover federal enforcement gaps. The state would join at least 10 others that require nonprofit hospitals to create a broad community benefit plan and 25 states that mandate the facilities publicly share their financial assistance policies, according to The Hilltop Institute, a think tank at the University of Maryland-Baltimore County.

Policymakers have focused on nonprofit hospitals as a growing number of people in the U.S. struggle to afford medical care and, altogether, owe at least $220 billion in medical debt. The debt disproportionately affects people in poverty and Black people, according to data analyzed by KFF, a health information nonprofit that includes KFF Health News.

States with set giving standards take different approaches. In recent years, California adopted new reporting requirements for hospitals to show how they serve vulnerable populations. Oregon created new rules for when and how hospitals must provide patients discounted care. And five states — Illinois, Nevada, Pennsylvania, Texas, and Utah — have set minimums that hospitals must spend toward community benefits.

Just over half of the hospitals in the U.S. are nonprofits. While each must report the “community benefits” they provide, federal law doesn’t specify which services qualify or how much to give. Inconsistent hospital reports make it difficult to distinguish between low and high givers.

Montana’s 2020 state audit found that hospitals report benefits vaguely and inconsistently. The following year, a KFF Health News investigation found that, even by hospitals’ own reports, some of Montana’s richest facilities fell behind the national average in community benefit spending.

A Montana law passed in 2023 requires the state health department to track hospitals’ giving and to define standards. The department’s proposed rules spell out some requirements, such as calling on hospitals to post financial assistance policies prominently online. But mostly, the list of requirements sets the stage for more to come.

Holly Matkin, a health department spokesperson, said the agency will establish standards that are “fair to all nonprofit hospitals.” The state plans to collect data over a three-year period to begin establishing standards in 2026.

The state’s proposed rules have some differences from federal requirements, such as mandating hospital-level reports as opposed to systemwide information that covers numerous hospital locations. They also leave room for the state to seek more details about how hospitals provide care at reduced prices, such as the number of people who receive financial aid or the average amount given per person.

But the Montana Hospital Association lobbied legislators against including too many reporting rules, arguing it would increase hospitals’ administrative burden. State lawmakers then narrowed the data the state can collect to largely the information hospitals already provide to the federal government. The association supports the state’s rules as proposed but has said any state standards need flexibility.

“The truth is that most communities have more health needs than they can effectively address,” said Bob Olsen, president and CEO of the Montana Hospital Association. “Models that apply a one-size-fits-all standard on communities take decision-making out of local communities, and have the potential to do more harm than good.”

Adam Zarrin, director of state government affairs with the Leukemia & Lymphoma Society, supported Montana’s proposal during a June 18 public hearing. But he testified that Montana could do more, such as mandating screening for financial assistance and requiring that hospitals provide it to patients at particular income levels.

“These rules could go even further to provide greater access and protections for Montanans who need and apply for financial assistance,” Zarrin said.

Health department officials said they plan to create numerical or narrative standards for judging how hospitals say they’ve responded to people’s needs — or a combination of the two. Officials are still vague on what either standard could entail. But they have said the benchmarks would be set each year based on each hospital’s size and patient revenue. Hospitals with operating losses wouldn’t have to meet the forthcoming rules.

Ge Bai, a health policy professor at Johns Hopkins University who has long studied hospitals’ community benefits, said such standards come with trade-offs. For example, standards that can be met through words rather than numbers might allow large hospitals to pay consultants to window-dress the story of their benefits while smaller systems struggle to show their worth. She said numerical rules, such as spending minimums, could cause some hospitals to slow efforts once they meet the state’s requirement.

“It’s not perfect,” Bai said. “But If we don’t do anything, well, that’s the status quo.”

In 2020, Oregon set minimums for the free or discounted care hospitals must provide, but even with those rules, the state’s overall charity care spending didn’t increase, Bai said. Last summer, lawmakers there added a new set of rules, including that hospitals must screen patients with large hospital bills to see if they qualify for financial assistance.

California also has implemented a combination of standards. In recent years, the state expanded reporting requirements, mandating that nonprofit hospitals explain the math behind their community benefits tally and detail how they’re serving vulnerable populations such as people who are homeless. The state also mandated that hospitals offer discounted care to uninsured patients or some people with costly medical bills.

Even in states like California, it can be hard to see how those policies affect patients who struggle to access care, said Barnett of the Public Health Institute. He said he’d like to see states require hospitals to reduce health disparities with specific outcomes, such as lowering preventable emergency room visits by people from especially poor neighborhoods.

In 2025, California will start requiring hospitals to submit annual reports that include an analysis of access to care and a plan to address disparities. The state is still defining those reporting rules.

Whatever standard states employ, health policy researchers said promoting transparency is key, such as by standardizing reporting rules to provide a clear picture across systems. Bai said Montana’s rules are a good first step.

Matkin, from the state health department, said whatever giving benchmarks Montana sets won’t be a copy-and-paste of what others have tried. The department plans to create standards unique to Montana.

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SACRAMENTO, Calif. — Californians working indoors are getting immediate protections from extreme heat as much of the state bakes in triple-digit temperatures this week.

California has had heat standards on the books for outdoor workers since 2005, but the state announced Wednesday that a set of rules for indoor workers had been finalized following an expedited review. The state’s Occupational Safety and Health Standards Board approved the regulation last month, but it needed to be vetted for legal compliance.

“This regulation provides protections for workers across California and helps prepare employers to deal with the challenges of rising temperatures in indoor environments,” said Debra Lee, chief of California’s Division of Occupational Safety and Health.

California is among a few states responding to the growing impacts of climate change and extreme heat with worker safety standards. Earlier this month, the Biden administration proposed federal rules to protect indoor and outdoor workers from heat exposure as extreme heat, already the No. 1 weather-related killer in the U.S., becomes even more dangerous.

California’s standards require indoor workplaces to be cooled below 87 degrees Fahrenheit when employees are present and below 82 degrees in places where workers wear protective clothing or are exposed to radiant heat, such as furnaces. Worksites that don’t have air conditioning may use fans, misters, and other methods to bring the room temperature down.

The rules allow workarounds for businesses if they can’t cool their workplaces sufficiently. In those cases, employers must provide workers with water, breaks, areas where they can cool down, cooling vests, or other means to keep them from overheating.

But even with workarounds, businesses are concerned about the cost of complying with the regulation, especially small businesses that don’t own their storefronts or are in old buildings, said Robert Moutrie, a senior policy advocate at the California Chamber of Commerce.

“The simplest answer to this regulation is AC, and that’s a costly investment,” Moutrie said. “If you’re a small business and you don’t own your structure, you can’t make changes like creating a new space to cool down.”

The rules have been in development since 2016 — delayed, in part, because of the covid pandemic. The worker safety board requested the regulations be expedited. A standard review would have delayed the regulation taking effect until the fall, leaving workers largely unprotected from the summer heat.

The regulation applies to most indoor workplaces, including classrooms and even delivery vehicles. But state regulators exempted prisons and local correctional facilities after Gov. Gavin Newsom’s administration projected it could cost the California Department of Corrections and Rehabilitation billions of dollars to implement.

The board intends to draft a separate regulation for the tens of thousands of workers at the state’s 33 state prisons, conservation camps, and local jails. That could take a year, if not longer.

In 2021, the Department of Health and Human Services reported, 1,602 heat-related deaths occurred nationally, which is likely an undercount because health care providers are not required to report them. In 2023, HHS reported, 2,302 heat-related deaths occurred. It’s not clear how many of these deaths are related to work, either indoors or outdoors.

Meanwhile, global temperatures in June were a record high for the 13th straight month.

“This is really one of the biggest safety issues we see workers experiencing across California in many different industries,” said Tim Shadix, legal director at the Warehouse Worker Resource Center, which lobbied for the protections. “And the problem is only getting worse with climate change and hotter summers.”

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

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Health insurance agents who fraudulently enroll consumers in Affordable Care Act health plans could be subject to criminal charges — and civil penalties of $10,000 to $200,000 — under legislation introduced Wednesday by Sen. Ron Wyden (D-Ore.), chairman of the powerful Senate Finance Committee.

Wyden first promised the bill in May, when he called on federal regulators to do more to combat sketchy Obamacare enrollment schemes. Often, consumers who are targeted don’t know they’ve been enrolled or that their coverage has been switched to a new plan until they lose access to preferred doctors, learn they have different deductibles, or find they owe taxes for ACA insurance premium subsidies.

The schemes exploit the federal health insurance enrollment system, which requires only minimal proof of identity — a name, birth date, and state — for a broker to create or access an account. The lure is monthly commissions paid by insurance companies — amounts that are only about $25 per person but can add up when multiplied across transactions.

“It is critical for these bad actors to be held criminally responsible and implement common sense consumer protections so working families can confidently purchase quality, affordable health insurance that works for them through honest brokers,” Wyden said in a statement.

The Centers for Medicare & Medicaid Services said July 19 that more than 200,000 people have complained about unauthorized Obamacare enrollment or plan switches this year.

KFF Health News began reporting on Affordable Care Act enrollment schemes this spring.

CMS’ directive last week also detailed new rules aimed at thwarting the problem by blocking agents from making changes to consumers’ coverage unless they are already “associated” with that policyholder’s account, or take other steps to verify that they have consumers’ permission.

Wyden’s proposal, co-sponsored by Democratic Sens. Sherrod Brown of Ohio, Tammy Duckworth of Illinois, Patty Murray of Washington, Brian Schatz of Hawaii, and Chris Van Hollen of Maryland, would call on federal regulators to begin verifying that consumers have granted consent to brokers for ACA enrollment or plan switches, and to notify consumers whenever a change is made to their accounts or coverage.

The civil penalties would range from at least $10,000, in cases of straightforward negligence, to as much as $200,000 for agents who “knowingly and willfully” submit fraudulent information.

Wyden’s bill faces a seemingly impossible climb, landing in a very polarized Senate during an election year.

But next year, the ACA will be in the spotlight as Congress must decide whether to extend beyond 2025 enhanced subsidies that help people purchase coverage. Increased subsidies were instituted under the Biden administration at the height of the pandemic and are considered a key factor behind recent record ACA enrollment.

Some Republican lawmakers have demanded investigations of ACA enrollment-switching schemes, which they allege may be part of a larger problem of brokers or consumers misstating their incomes to garner insurance subsidies. Obamacare supporters say the complaint is a partisan effort to stop the enhanced subsidies from becoming permanent.

Sen. Chuck Grassley (R-Iowa) sent a letter July 8 to CMS questioning how federal regulators verify incomes for those who get subsidies and what enforcement efforts are underway related to potential ACA subsidy fraud.

Wyden’s office said his proposal is supported by some insurers and agent groups, including AHIP, the trade association for insurance companies; individual insurers like Centene Corp.; and several disease-specific patient advocacy groups, including the Leukemia & Lymphoma Society, the American Cancer Society Cancer Action Network, and the National Multiple Sclerosis Society.

Health Agents for America, a group that has sought solutions to the issue, supports criminal charges for agents found to be falsely enrolling or switching consumers but stopped short of endorsing Wyden’s bill. Ronnell Nolan, its president and CEO, said her organization would like to see more effort “to hold CMS responsible” for allowing what she views as security loopholes in private sector enrollment websites, and in enforcement actions against bad actors.

“The bottom line is to stop fraud and help the consumer,” she said.

In a July 19 letter to Wyden’s office, CMS Administrator Chiquita Brooks-LaSure outlined steps the agency has taken to increase “oversight of agents and brokers to protect consumers” — including suspending 200 agents in recent weeks from enrolling clients in Obamacare plans.

“The numbers being addressed are very low,” said Nolan, who suspects it isn’t just individual rogue agents seeking commissions by changing ACA enrollments, but a larger effort using automation to rapidly enroll or switch consumer policies.

Nolan and other agents say federal regulators should simply require private Obamacare enrollment sites to add layers of security before agents can access consumer accounts.

Eighteen states and the District of Columbia run their own ACA marketplaces and require additional security measures, including two-factor authentication, before consumer accounts can be accessed. Two-factor authentication, a common internet security feature, requires people to enter a code — usually sent to their phones — before accessing accounts at banks, social media platforms, and many other services.

The state-run enrollment sites report far fewer problems than the federal marketplace, Nolan and others say. If CMS simply added two-factor authentication to healthcare.gov, Nolan said, “all these other shenanigans would not happen.”

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Planned Parenthood’s political and advocacy organizations will use a more than $40 million war chest to blitz GOP officeholders and candidates in an effort to flip the House and maintain Democratic control of the Senate and presidency.

The plan is to focus on the records of Republicans who have repeatedly voted against access to abortion, contraceptives, in vitro fertilization or gender-affirming care for trans people.

On Tuesday, the organization’s lobbying arm, Planned Parenthood Action Fund, announced its endorsement of Kamala Harris for president.

Since Roe v. Wade was overturned in 2022, the right to abortion has proved to be an issue that motivates voters, and Planned Parenthood is betting that will again be true at the ballot box this fall. News that Harris is now the leading Democratic presidential candidate, with President Biden stepping back, is also energizing advocates.

Alexis McGill Johnson, Planned Parenthood Action Fund president and CEO, called Harris “one of the fiercest voices we have on sexual and reproductive rights.”

“Having spent meaningful time and energy with abortion providers, patients, organizers and advocates, the Vice President’s presence takes the conversation around abortion rights to heights we’ve never seen before in a presidential campaign,” she said. “There’s no doubt that she will generate new energy for the future of the fight ahead.”

Twenty-five states ban abortion in almost all circumstances or limit access to it beginning early in pregnancy. Other states are considering similar restrictions. And support for a national abortion ban may pick up currency if Republicans gain control of Congress and the White House.

Shwetika Baijal, who runs political initiatives for Planned Parenthood, said recent elections have shown that abortion drives voter turnout, especially among young people and people of color. An example of this is the 2022 Kansas primary election, in which voters from a red state turned out in record numbers shortly after the Dobbs decision to resoundingly protect abortion rights.

“I think you find that when you take someone’s rights away, it makes them really angry,” Baijal said.

The national Planned Parenthood campaign is hoping to leverage this anger starting with races in several battleground states, including Arizona, Michigan and Nevada. The aggressive ad campaign has already hit multiple platforms, including podcasts like Call Her Daddy, a sex and relationship show, which has received an average of 5 million listeners a week.

On top of that, Planned Parenthood’s California affiliates will spend a seven-figure amount to target eight congressional districts, most of which typically vote Republican but in which voters supported a 2022 ballot measure to enshrine abortion rights in the state constitution.

Republicans dismiss the Planned Parenthood efforts, noting that even districts that backed the 2022 measure also voted to keep their Republican leaders in charge. California Assembly Republican leader James Gallagher, who is on the state Republican Party board, said he doesn’t see a reason the 2024 elections will play out differently.

“People can be supportive of abortion rights and still vote for the Republicans because they feel the Republican is better at addressing the everyday issues,” Gallagher said.

Baijal said calling attention to Republicans’ voting records is crucial now that many are backing away from long-held, hard-line antiabortion positions that are proving unpopular. Some candidates, like Republican Senate nominee Sam Brown of Nevada, have pledged to protect abortion rights, even if their past statements suggest otherwise.

“We have to talk about what these people are trying to do, not what they’re saying,” Baijal says.

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Louisiana lawmakers have added two drugs commonly used in pregnancy and reproductive health care to the state’s list of controlled dangerous substances, a move that has alarmed doctors in the state.

Mifepristone and misoprostol have many clinical uses, and one use approved by the FDA is to take the pills to induce an abortion at up to 10 weeks of gestation.

The bill that moved through the Louisiana Legislature this spring lists both medications as Schedule IV drugs under the state’s Uniform Controlled Dangerous Substances Law, creating penalties of up to 10 years in prison for anyone caught with the drugs without a valid prescription. Gov. Jeff Landry, a Republican, signed the bill into law in May. It takes effect Oct. 1.

The new law is the latest move by anti-abortion advocates trying to control access to abortion medications in states with near-total abortion bans, such as Louisiana. The law is the first of its kind, opening a new front in the state-by-state battle over reproductive medicine.

Republican-controlled states have passed various laws regulating medication abortion in the past, said Daniel Grossman, an OB-GYN and a reproductive health researcher at the University of California-San Francisco.

But after the Dobbs v. Jackson Women’s Health Organization decision in 2022, in which the Supreme Court ruled there was no constitutional right to an abortion, scrutiny of medication abortions escalated as clinics in certain states shuttered completely or were required to stop offering in-clinic procedures.

“It’s not surprising that states are trying everything they can to try to restrict these drugs,” Grossman said. “But this is certainly a novel approach.”

Before the Louisiana bill passed, more than 250 OB-GYNs and emergency, internal medicine, and other physicians from across the state signed a letter to the bill’s sponsor, state Sen. Thomas Pressly, a Republican, arguing the move could threaten women’s health by delaying lifesaving care.

“It’s just really jaw-dropping,” said Nicole Freehill, a New Orleans OB-GYN who signed the letter. “Almost a day doesn’t go by that I don’t utilize one or both of these medications.”

Mifepristone and misoprostol are routinely used to treat miscarriages, stop obstetric hemorrhaging, induce labor, or prepare the cervix for a range of procedures inside the uterus, such as inserting an IUD or taking a biopsy of the uterine lining.

Bill Born From a Family’s Misfortune

The proposal to reschedule the drugs as controlled dangerous substances was introduced as amendments to Pressly’s original bill creating the crime of “coerced criminal abortion” — where someone “knowingly” gives abortion pills to a pregnant woman to cause or attempt to cause an abortion “without her knowledge or consent.”

Pressly’s sister, Catherine Pressly Herring, testified at the hearing on the bill that she had been given abortion drugs without her knowledge by her former husband. Pressly said his sister’s story prompted the legislation.

In a statement, Pressly said that he added the new amendments to “control the rampant illegal distribution of abortion-inducing drugs.” He did not respond to requests for comment.

“By placing these drugs on the controlled substance list, we will assist law enforcement in protecting vulnerable women and unborn babies,” Pressly wrote in this statement.

Louisiana Right to Life, the state’s most influential anti-abortion group, helped draft the bill. And the group’s communications director, Sarah Zagorski, said that claims that rescheduling the drugs as dangerous could harm women’s health are “fearmongering.”

The real problem, she said, is that mifepristone and misoprostol are too accessible in Louisiana and are being used to induce abortions despite the state’s ban.

“We’ve had pregnancy centers email us with many stories of minors getting access to this medication,” Zagorski said.

Studies have shown a surge in the ordering of abortion pills online in states that have severe restrictions on abortion.

In the Louisiana Legislature committee hearing on the bill, anti-abortion advocates said that physicians would still be allowed to dispense mifepristone and misoprostol for lawful medical care, and that women who give themselves abortions using the medications would be exempted from criminal liability.

“Under this law, or any abortion law, in Louisiana we see the woman as often the second victim,” testified Dorinda Plaisance, a lawyer who works with Louisiana Right to Life. “And so Louisiana has chosen to criminalize abortion providers” rather than women who use the medications for their own abortions.

Move ‘Not Scientifically Based,’ Doctors Say

The U.S. Drug Enforcement Administration and individual states have the power to list drugs as controlled dangerous substances.

State and federal regulations aim to control access to drugs, such as opioids, based on their medical benefit and their potential for abuse, according to Joseph Fontenot, executive director of the Louisiana Board of Pharmacy, the agency that monitors drugs listed as controlled dangerous substances.

Like other states, Louisiana tracks prescriptions in databases that include the name of the patient, the health provider who wrote the prescription, and the dispensing pharmacy.

Physicians need a special license to prescribe the drugs — in 2023, there were 18,587 physicians in Louisiana, 13,790 of whom had a license to prescribe controlled dangerous substances, according to data from the Louisiana State Board of Medical Examiners and the Board of Pharmacy.

“Every state has a prescription drug monitoring program. And they really are designed to identify prescription drug mills that are hawking fentanyl and opioid painkillers,” said Robert Mikos, a professor of law and a drug policy expert at Vanderbilt University.

What happened to Pressly’s sister — being tricked into taking mifepristone or misoprostol — is a form of drug abuse, said Zagorski of Louisiana Right to Life, which is why the drugs should be more strictly controlled.

But Fontenot, of the Louisiana Board of Pharmacy, said that under Louisiana’s law, abuse refers to addiction. Jennifer Avegno, a New Orleans emergency physician and the director of the New Orleans Health Department, agrees. “There is no risk of someone getting hooked on misoprostol,” Avegno said.

Under the new law, mifepristone and misoprostol will be added to a list comprised of opioids, depressants, and stimulants. “To classify these medications as a drug of abuse and dependence in the same vein as Xanax, Valium, Darvocet is not only scientifically incorrect, but [a] real concern for limiting access to these drugs,” Avegno said.

Doctors worry that the bill could set a dangerous precedent for state officials who want to restrict access to any drug they consider dangerous or objectionable, regardless of its addictive potential, Avegno said.

Fears Over Delays in Care

In their letter opposing the reclassification, doctors said the “false perception that these are dangerous drugs” could lead to “fear and confusion among patients, doctors, and pharmacists, which delays care and worsens outcomes” in a state with high rates of maternal injury and death.

The increased scrutiny could have a statewide chilling effect and make doctors, pharmacists, and even patients more reluctant to use these drugs, the doctors wrote.

The state database allows any doctor or pharmacist to look up the prescription history of his or her patient. The data is also accessible by the Louisiana State Board of Medical Examiners, which licenses physicians and other providers, and by law enforcement agencies with a warrant.

“Could I be investigated for my use of misoprostol? I don’t know,” said Freehill, the New Orleans OB-GYN.

Pharmacists could become more reluctant to dispense the medications, Freehill said, exacerbating a problem she and other OB-GYNs have been dealing with since Louisiana banned nearly all abortions. That reluctance could lead to patients miscarrying without timely treatment.

“They could be sitting there bleeding, increasing their risk that they would have a dangerous amount of blood loss” or risking infection, she said.

Before the bill passed, Freehill routinely phoned in every prescription for misoprostol when her patients were miscarrying so she could explain to the pharmacist why she was prescribing it. Once the bill goes into effect in the fall and the drug becomes a controlled dangerous substance, that will no longer be possible because those types of prescriptions must be written on a pad or sent electronically.

In hospitals, the drugs will also have to be locked away. That could potentially cause delays getting the drug when a patient is hemorrhaging after childbirth.

Doctors worry some patients might be afraid to take the medications once they’re listed as dangerous, Avegno said.

In a written response to the Louisiana physicians who signed the protest letter, Pressly said the doctors whom he’s spoken with feel the bill “will not harm health care for women.”

Criminalizing Support for Abortions

Louisiana’s abortion ban already makes it a crime to provide an abortion, including by giving someone medications used to induce abortion. And a 2022 law added up to 50 years in prison for mailing mifepristone or misoprostol.

Because the new law explicitly exempts pregnant women, opponents like Elizabeth Ling believe it is meant to isolate those women from others who would help them. Ling, a reproductive rights attorney at If/When/How, is particularly concerned about the prison penalties, which she believes are intended to frighten and disrupt underground networks of support for patients seeking the pills.

Pregnant patients might worry about ordering online or enlisting a friend to help obtain the pills: “Is my friend who is simply just providing me emotional support going to somehow, you know, be punished for doing that?” Ling said.

Ling added that there’s concern that the law could also be used to target people who aren’t pregnant but who want to order abortion pills online and stock them in case of a future pregnancy. That practice has become increasingly popular in states with abortion bans.

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

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WALL, S.D. — Stacey Schulz parks in a rear lot to avoid the crowded Main Street entrances to her local pharmacy.

“During the summer, it’s kind of hectic,” she said after greeting the pharmacist and technician by name.

That’s because Schulz’s pharmacy is tucked inside Wall Drug, a tourist attraction that takes up almost an entire block and draws more than 2 million visitors a year to a community of fewer than 700 residents.

The business is named after the town of Wall, which is just off Interstate 90 near Badlands National Park. Colorful, hand-painted billboards dot the roadside for hundreds of miles, telling motorists how far they are from Wall Drug’s free ice water, 5-cent coffee, and homemade doughnuts. Visitors can pan for gold, listen to singing animatronic cowboys, try on Western wear, and shop for souvenirs, including plush jackalopes — mythical jackrabbits with antelope horns.

Despite being part of a booming tourist attraction, Wall Drug’s pharmacy faces challenges common to independent rural pharmacies.

It’s the lone pharmacy in Wall, serving locals year-round. Some, like Schulz, live in town, while others live on ranches as far as 60 miles away. The next-nearest pharmacy is a 30-minute drive northeast.

Wall Drug also serves tourists who forget their prescriptions at home, get sick while roaming the country in their RVs, or hurt themselves while hiking through the otherworldly rock formations of the scorching Badlands, said Cindy Dinger, its sole pharmacist.

Wall has no hospital, but a clinic is open four days a week. Schulz, a medical assistant there, said she and her co-workers see a lot of summer tourists. They send them to Wall Drug to pick up prescriptions.

“And then we tell them to get fudge before they leave,” Schulz said.

Rural pharmacies, especially independent ones, closed at a higher rate from 2003 to 2021 than pharmacies in other areas, according to a study by the Rural Policy Research Institute. By 2021, the institute found, nearly 8% of rural counties were left with no pharmacy. The Wall Drug pharmacy has fewer customers than a typical city pharmacy, which can mean less profit, Dinger said.

She said some of its prices are higher because the store can’t negotiate discounts as steep as the deals suppliers grant chain pharmacies. Rural drugstores also lack leverage with insurers, and they face increasing competition from mail-order pharmacies.

Another challenge is staffing. When Dinger needs time off, she finds a fill-in from Rapid City, nearly an hour’s drive away.

“It’s a challenge getting relief if I want to go on vacation or if I need a cover so that I can go to a doctor’s appointment,” she said. “You take what you can get and try to schedule around it.”

Dinger said her pharmacy would struggle without the rest of Wall Drug.

“All this stuff around us — the poster and print shop, the boot shop, the fudge shop, the café — they pay our bills,” she said.

The pharmacy’s white facade, with stained-glass signs and windows, is modeled after that of the original drugstore, which was across the street. The window displays and top shelves inside the store are filled with vintage pharmacy supplies, including manuals, glass medicine bottles, and a suppository-making machine.

Tourists carrying shopping bags and sporting new cowboy hats stop to look at the displays. “It’s a real pharmacy,” a woman said, sounding surprised.

Dinger and Sylvia Smith, the store’s only pharmacy tech, ring customers up below a Tiffany-style light fixture and retrieve prescriptions stored behind a wooden desk and wall.

Customer Will Lovitt said a friend advised him and his wife to stop at Wall Drug during their drive from Indiana to the Black Hills in western South Dakota. Lovitt developed a rash on the trip and ended up using the visit to get Dinger’s advice on treating it.

He said it can be difficult for tourists to know where to find medical help, especially when driving through rural states like South Dakota.

“I think it’s time that America gets back to the grass roots of the small-town doctor and the small-town pharmacist,” Lovitt said.

Alex Davis and a friend decided to visit Wall Drug on their road trip from Kansas to Yellowstone National Park.

“Then, when I saw there was a little pharmacy, I thought I’d grab something that I needed,” she said.

Davis bought Dramamine to treat car sickness on the long drive.

Dinger said she occasionally sees unusual situations, like the time several years ago when a park ranger needed antibiotics after getting bitten by a prairie dog.

“You never know what kind of diseases they might be carrying,” she said of the animals, which recently were hit with an outbreak of plague.

Rick Hustead is the chairman of Wall Drug. The store was opened in 1931 by his grandfather, pharmacist Ted Hustead. Ted’s wife, Dorothy, had the idea to advertise its soda fountain and free ice water to tourists traveling along unpaved roads during the hot years of the Dust Bowl era. Rick’s father, pharmacist Bill Hustead, began expanding the store in the ’50s, turning it into the tourist magnet it is today.

Rick Hustead didn’t follow his father and grandfather’s path to pharmacy school, so he had to recruit pharmacists from elsewhere.

Hustead found Dinger in 2010 after writing a letter to each pharmacist in the state.

Dinger said she was living at the time in Sioux Falls, South Dakota’s most populous city. But she and her husband were interested in raising their kids in a small town, the way she grew up. Dinger was also attracted by the store’s limited hours: She’d be done working by 5 p.m. on weekdays and have the weekends off.

Hustead said his family has never considered closing the pharmacy, even though it’s not the main attraction for most visitors.

“We can’t be Wall Drug without being a drugstore,” he 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 HostJulie RovnerKFF 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.The Republican National Convention highlighted a number of policy issues this week, but health care was not among them. That was not much of a surprise, as it is not a top priority for former President Donald Trump or most GOP voters. The nomination of Sen. J.D. Vance of Ohio adds an outspoken abortion opponent to the Republican ticket, though he brings no particular background or expertise in health care.

Meanwhile, abortion opponents are busy trying to block state ballot questions from reaching voters in November. Legal battles over potential proposals continue in several states, including Florida, Arkansas, and Arizona.

This week’s panelists are Julie Rovner of KFF Health News, Alice Miranda Ollstein of Politico, Sarah Karlin-Smith of the Pink Sheet, and Joanne Kenen of the Johns Hopkins schools of public health and nursing and Politico Magazine.

PanelistsAlice Miranda OllsteinPolitico@AliceOllstein Read Alice's stories.Joanne KenenJohns Hopkins University and Politico@JoanneKenen Read Joanne's articles.Sarah Karlin-SmithPink Sheet@SarahKarlin Read Sarah's stories.Among the takeaways from this week’s episode:

• Sen. J.D. Vance of Ohio has cast few votes on health policy since joining Congress last year. He has taken a doctrinaire approach to abortion restrictions, though, including expressing support for prohibiting abortion-related interstate travel and invoking the Comstock Act to block use of the mail for abortion medications. He also speaks openly about his mother’s struggles with addiction, framing it as a health rather than criminal issue in a way that resonates with many Americans.
• Although Republicans have largely abandoned calls to repeal and replace the Affordable Care Act, it would be easy for former President Donald Trump to undermine the program in a second term; expanded subsidies for coverage are due to expire next year, and there’s always the option to cut spending on marketing the program, as Trump did during his first term.
• Trump’s recent comments to Robert F. Kennedy Jr. about childhood vaccinations echoed tropes linked to the anti-vaccination movement — particularly the false claim that while one vaccine may be safe, it is perhaps dangerous to receive several at once. The federal vaccination schedule has been rigorously evaluated and found to be safe and effective.
• Covid is surging once again, with President Joe Biden among those testing positive this week. The virus is proving a year-round concern and has peaked regularly in summertime; covid spreads best indoors, and lately millions of Americans have taken refuge inside from extremely high temperatures. Meanwhile, the virology community is concerned that the nation isn’t testing enough animals or humans to understand the risk posed by bird flu.

Also this week, Rovner interviews KFF Health News’ Renuka Rayasam, who wrote the June installment of KFF Health News-NPR’s “Bill of the Month,” about a patient who walked into what he thought was an urgent care center and walked out with an emergency room bill. If you have an exorbitant or baffling medical bill, you can send it to us here.

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

Julie Rovner: Time magazine’s “‘We’re Living in a Nightmare:’ Inside the Health Crisis of a Texas Bitcoin Town,” by Andrew R Chow.

Joanne Kenen: The Washington Post’s “A Mom Struggles To Feed Her Kids After GOP States Reject Federal Funds,” by Annie Gowen.

Alice Miranda Ollstein: ProPublica’s “Texas Sends Millions to Crisis Pregnancy Centers. It’s Meant To Help Needy Families, but No One Knows if It Works,” by Cassandra Jaramillo, Jeremy Kohler, and Sophie Chou, ProPublica, and Jessica Kegu, CBS News.

Sarah Karlin-Smith: The New York Times’ “Promised Cures, Tainted Cells: How Cord Blood Banks Mislead Patients,” by Sarah Kliff and Azeen Ghorayshi.

Also mentioned on this week’s podcast:

The Wall Street Journal’s “Mail-Order Drugs Were Supposed To Keep Costs Down. It’s Doing the Opposite,” by Jared S. Hopkins.

CreditsFrancis YingAudio producerEmmarie Huetteman Editor To hear all our podcasts, click here.

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

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

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Justo después del mediodía del 18 de junio, líderes de Massachusetts descubrieron que el sistema estatal de emergencias 911 estaba fuera de servicio.

Fue cuando comenzó una carrera para manejar la crisis.

La policía envió mensajes de texto con números alternativos al que las personas podían llamar, la alcaldesa de Boston, Michelle Wu, habló sobre la interrupción del 911 en una conferencia de prensa por el desfile de campeonato de los Celtics, y funcionarios locales instaron a las personas a pedir ayuda activando las alarmas rojas contra incendios.

Unas 7 millones de personas estuvieron por cerca de dos horas sin el servicio del 911. Estas fallas ya no son una excepción sino una constante en un sistema de respuesta a emergencias quebrado.

Este año, las interrupciones han afectado al menos a ocho estados. Y son emblemáticas de los problemas que aquejan a las comunicaciones de emergencia, en parte debido a las grandes disparidades en la antigüedad y las capacidades de los sistemas, y en la financiación también dispar que recibe el sistema del 911 a lo largo del país.

Mientras que algunos estados, ciudades y condados ya han modernizado sus sistemas o han hecho planes para actualizarlos, muchos otros están rezagados.

El 911 suele financiarse a través de tarifas agregadas a las facturas telefónicas, pero los gobiernos estatales y locales también recurren a fondos generales u otros recursos.

“Ahora hay quienes tienen y quienes no tienen”, dijo Jonathan Gilad, vicepresidente de asuntos gubernamentales de la Asociación Nacional de Números de Emergencia (NENA), que representa a los trabajadores de primeros auxilios del 911. “El 911 de próxima generación no debería ser solo para las personas que tienen una emergencia en un buen lugar”.

Mientras tanto, la legislación federal que podría dirigir miles de millones de dólares para modernizar el sistema fragmentado del 911 sigue estancada en el Congreso.

“Esto es algo imperativo para la seguridad nacional”, dijo George Kelemen, director ejecutivo del Consejo de la Industria para Tecnologías de Respuesta a Emergencias, una asociación comercial que representa a empresas que proveen hardware y software a la industria de respuesta a emergencias.

“En una crisis, un tiroteo en una escuela o un incendio en una casa o, Dios no lo quiera, un ataque terrorista, la gente llama al 911 primero”, dijo. “El sistema no puede fallar”.

Estados Unidos inauguró un número de emergencia universal único, el 911, en febrero de 1968 para simplificar la respuesta a las crisis.

Pero en lugar de un programa nacional sin fisuras, la red de respuesta del 911 se ha convertido en un enorme rompecabezas de muchas piezas interconectadas. Hay más de 6,000 centros de llamadas del 911 para manejar un estimado de 240 millones de llamadas de emergencia cada año, según datos federales.

Más de tres cuartos de los centros de llamadas experimentaron interrupciones en los últimos 12 meses, según una encuesta realizada en febrero por NENA, que establece estándares y aboga por el 911, y Carbyne, un proveedor de soluciones tecnológicas de seguridad pública.

En abril, las interrupciones generalizadas del 911 afectaron a millones en Nebraska, Nevada, Dakota del Sur y Texas. La interrupción se atribuyó a trabajadores que cortaron una línea de fibra mientras instalaban un poste de luz.

En febrero, decenas de miles de personas en áreas de California, Georgia, Illinois, Texas y otros estados perdieron el servicio de telefonía móvil, incluidos algunos servicios del 911, debido a una interrupción.

Y en junio, Verizon acordó pagar una multa de $1.05 millones para resolver una investigación de la Comisión Federal de Comunicaciones sobre una interrupción en diciembre de 2022 que afectó las llamadas al 911 en Alabama, Florida, Georgia, Carolina del Norte, Carolina del Sur y Tennessee.

Los incendios que arrasaron la isla hawaiana de Maui en agosto pasado destacaron la importancia crítica de los sistemas del 911. Los despachadores atendieron más de 4,500 contactos, es decir, llamadas y mensajes de texto, el 8 de agosto, el día en que se desataron los incendios, en comparación con unos 400 en un día típico, dijo Davlynn Racadio, coordinadora de despachos de servicios de emergencia en el condado de Maui.

“Nos estamos muriendo”, dijo una persona a los operadores del 911.

Pero algunas torres de telefonía móvil fallaron debido a interrupciones generalizadas del servicio, según funcionarios del condado. El condado de Maui presentó en mayo una demanda contra cuatro compañías de telecomunicaciones, alegando que no informaron a los despachadores sobre las interrupciones.

“Si las llamadas al 911 llegaban sin voz, enviábamos mensajes de texto”, dijo Racadio. “El estado está considerando actualizar nuestro sistema. El 911 de próxima generación nos lanzaría al futuro”.

En 2023, Florida, Illinois, Montana y Oklahoma aprobaron legislaciones para impulsar o financiar sistemas de 911 modernizados, según la Conferencia Nacional de Legislaturas Estatales. Las actualizaciones incluyen reemplazar la infraestructura analógica del 911 con sistemas digitales basados en Internet.

En lugar de solo atender llamadas, los sistemas de próxima generación pueden localizar la ubicación del que llama, aceptar mensajes de texto y permitir que los residentes en una crisis envíen videos e imágenes a los despachadores.

Aunque aún pueden ocurrir interrupciones, los sistemas modernizados a menudo incluyen más componentes para minimizar las probabilidades de una interrupción, dijo Gilad.

Los legisladores han considerado modernizar los sistemas del 911 aprovechando los ingresos que la Comisión Federal de Comunicaciones (FCC) obtiene de subastar los derechos para transmitir señales sobre bandas específicas del espectro electromagnético.

Pero, en marzo de 2023, el Senado de Estados Unidos, permitió por primera vez la expiración de la autoridad de la FCC para subastar bandas de espectro.

La legislación que asignaría casi $15 mil millones en subvenciones de los ingresos de las subastas para acelerar el desarrollo del 911 de próxima generación en cada estado fue aprobada por unanimidad por el Comité de Energía y Comercio de la Cámara de Representantes en mayo de 2023. El proyecto de ley, HR 3565, patrocinado por la representante Cathy McMorris Rodgers (republicana de Washington), también extendería la autoridad de la FCC para subastar.

Otros legisladores han presentado proyectos, incluyendo uno en marzo del senador Ted Cruz (republicano de Texas) y de la senadora Maria Cantwell (demócrata de Washington) para extender la autoridad de subasta. Por ahora, ninguno de los esfuerzos ha avanzado.

Nueve ex presidentes de la FCC escribieron a los legisladores en febrero, instándolos a hacer de las actualizaciones del 911 una prioridad nacional. Sugirieron que el Congreso utilizara el dinero federal para covid-19 que no se gastó.

“Cualquiera que sea la fuente de financiamiento, la necesidad es urgente y el momento de actuar es ahora”, escribieron.

Ajit Pai, quien se desempeñó como presidente de la FCC de 2017 a 2021, dijo que las interrupciones a menudo ocurren en sistemas de computación obsoletos.

“El hecho de que ahora la FCC no tenga autoridad para subastar espectro es un verdadero obstáculo”, dijo Pai a KFF Health News. “Es posible que nunca necesites llamar al 911, pero puede marcar la diferencia entre la vida y la muerte. Necesitamos un esfuerzo más organizado a nivel federal porque el 911 está demasiado descentralizado”.

Mientras tanto, algunos líderes de seguridad están haciendo planes de respaldo para las interrupciones del 911 o realizando investigaciones sobre sus causas. En Massachusetts, un firewall diseñado para prevenir piratería provocó la reciente interrupción de dos horas, según el departamento del 911 del estado.

“Las interrupciones llaman la atención de todos sobre el hecho de que dependemos del 911 y no pensamos en cómo realmente dependemos de este número hasta que ocurre algo”, dijo April Heinze, directora de operaciones del 911 en NENA.

Mass General Brigham, un sistema de salud en el área de Boston, envió alertas de emergencia cuando ocurrió la interrupción, informando a las clínicas y prácticas más pequeñas sobre cómo encontrar sus números de emergencia de 10 dígitos. A raíz de la interrupción, planea mantener los números de respaldo junto a los teléfonos en esas instalaciones.

“Dos horas pueden ser mucho tiempo”, dijo Paul Biddinger, director de preparación y continuidad del sistema de salud.

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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“Low INSULIN PRICING was gotten for millions of Americans by me, and the Trump Administration, not by Crooked Joe Biden. He had NOTHING to do with it.”

Former President Donald Trump in a Truth Social post, June 8

Former President Donald Trump has repeatedly claimed that he — and not President Joe Biden — deserves credit for lowering older Americans’ prescription drug prices, specifically for insulin.

In a June 8 post on Truth Social, the former president’s social platform, Trump wrote: “Low INSULIN PRICING was gotten for millions of Americans by me, and the Trump Administration, not by Crooked Joe Biden. He had NOTHING to do with it.”

Trump again claimed sole credit for lowering insulin prices during the June 27 presidential debate in Atlanta. After Biden touted the $35 monthly out-of-pocket cap for Medicare patients mandated by the Inflation Reduction Act, Trump responded: “I’m the one that got the insulin down for the seniors. I took care of the seniors.”

It’s not just the former president making such claims. Fox News anchor John Roberts and former Arkansas Gov. Mike Huckabee, a Republican, both have said the Biden administration is wrong to take credit for lowering insulin costs.

Because drug prices and Medicare will likely be issues in the presidential campaign, we dug into the facts surrounding those claims.

The Trump Administration’s Program

Trump is correct that his administration enacted a program to lower insulin costs for some patients on Medicare.

In July 2020, Trump signed an executive order establishing the “Part D Senior Savings Model,” a temporary, voluntary program run by the Centers for Medicare & Medicaid Services that let some Medicare Part D prescription drug plans cap monthly out-of-pocket insulin copay costs at $35 or less. It covered at least one insulin product of each dosage and type.

The program began Jan. 1, 2021, and ran through Dec. 31, 2023. In 2022, the Trump-era program included a total of 2,159 Medicare drug plans, and CMS estimated that more than 800,000 Medicare beneficiaries who use insulin could have benefited from it that year.

The Department of Health and Human Services has estimated that more than 1.5 million Medicare beneficiaries paid more than $35 a month for insulin in 2020, before Trump’s program took effect. An analysis by the Rand Corp., a nonpartisan think tank, showed the program reduced participants’ out-of-pocket insulin costs by $198 to $441 per year on average, depending on their Medicare plan.

The Inflation Reduction Act Provisions

The Inflation Reduction Act, which Congress passed and Biden signed into law in August 2022, included an insulin provision that went further than Trump’s voluntary initiative.

The act did cap out-of-pocket costs of insulin for Medicare patients at $35 per month. But whereas the Trump program applied only to certain Medicare Part D plans, the act mandated that all Medicare drug programs cap out-of-pocket insulin costs — including those in what’s known as Medicare Part B, which pays for medical equipment such as insulin pumps. The act’s insulin provisions took effect Jan. 1, 2023, for Part D plans and July 1 of that year for Part B.

The act also mandated that the out-of-pocket price cap apply to all insulin products a given Medicare plan covers, not just a subset.

Taken together, those provisions mean a far greater number of Medicare beneficiaries stand to benefit from the act’s insulin provisions — including people receiving insulin via a pump, who were left out of the Trump-era program.

CMS estimates that more than 3.3 million Medicare beneficiaries use one or more of the common forms of insulin. Although some of those people were likely already paying less than $35 per month for their medications, the Inflation Reduction Act benefited far more than the 800,000 patients affected by Trump’s program.

“It’s likely a larger population than under the Trump administration’s model,” said Juliette Cubanski, deputy director of the Program on Medicare Policy at KFF, a health information nonprofit that includes KFF Health News.

“The Trump administration did establish this voluntary model, and one perhaps could view that as some precedent for what we saw in the Inflation Reduction Act,” Cubanski added. “But I think it’s inaccurate to state that President Biden had nothing to do with enabling millions of Americans to benefit from lower insulin copayments.”

Preliminary research shows the Inflation Reduction Act’s insulin provisions had a greater average financial benefit than those in Trump’s program. Insulin-using older Americans were estimated to save an annual average of $501 per person, HHS figures show.

The Inflation Reduction Act has also had an impact beyond Medicare. After the law passed, some pharmaceutical companies — including Eli Lilly and Co., Novo Nordisk, Sanofi, and Civica Rx — self-imposed price caps for all insured insulin users, not just Medicare patients. During his 2023 State of the Union address, Biden proposed expanding this benefit to all insulin patients, and he’s made that point a staple of his campaign appearances.

“I’m determined to make that apply to every American, not just seniors, in the second term,” he said at a campaign event in May in Philadelphia.

The Stakes for the 2024 Election

Beyond insulin products, the Inflation Reduction Act caps total out-of-pocket prescription costs at $2,000 annually for people with Medicare drug plans starting in 2025, down from $3,300 this year for most Medicare beneficiaries.

But every congressional Republican opposed the Inflation Reduction Act, including its insulin savings provisions, in 2022, and the law is vulnerable to repeal should Trump take the White House. Trump has repeatedly criticized the law and called for overturning some of its provisions. He has not specified how he would address its health measures.

In an email exchange with KFF Health News, Trump campaign spokesperson Karoline Leavitt highlighted drug savings programs the former president instituted during his term in office, but repeatedly declined to extrapolate on, or defend, Trump’s claim that Biden deserves no credit for lowering insulin costs.

Asked whether Trump intended to maintain the Inflation Reduction Act’s insulin provisions should he win a second term in office, Leavitt wrote, “President Trump will do everything possible to lower drug costs for Americans when he’s back in the White House, just like he accomplished in his first term.”

Our Ruling

Trump can claim some credit for lowering insulin costs for seniors, as his administration advanced a voluntary program to do so.

But his claim that Biden had “NOTHING to do with it” is patently false. The Inflation Reduction Act, which Biden signed into law, imposed a mandatory Medicare insulin price cap that applied across the program, benefiting a significantly larger number of insulin users — including people not enrolled in Medicare.

We rate Trump’s claim False.

Sources:Civica Rx, “Civica to Manufacture and Distribute Affordable Insulin,” March 3, 2022

Centers for Medicare & Medicaid Services, “Part D Senior Savings Model,” accessed July 2, 2024

CMS, “President Trump Announces Lower Out of Pocket Insulin Costs for Medicare’s Seniors,” May 26, 2020

CNN, “READ: Biden-Trump Debate Transcript,” June 28, 2024

Eli Lilly and Co., “Lilly Cuts Insulin Prices by 70% and Caps Patient Insulin Out-of-Pocket Costs at $35 Per Month,” March 1, 2023

Email exchange with Karoline Leavitt, Donald J. Trump 2024 campaign national press secretary, July 1, 2024

Facebook.com, post by @MikeHuckabee, June 10, 2024

Federal Registrar, “Access to Affordable Life-Saving Medications,” July 24, 2020

Department on Health and Human Services, “Insulin Affordability and the Inflation Reduction Act: Medicare Beneficiary Savings by State and Demographics,” Jan. 24, 2023

KFF, “Changes to Medicare Part D in 2024 and 2025 Under the Inflation Reduction Act and How Enrollees Will Benefit,” April 20, 2023

Novo Nordisk, “Novo Nordisk To Lower U.S. Prices of Several Pre-Filled Insulin Pens and Vials up to 75% for People Living With Diabetes in January 2024,” March 14, 2023

Phone interview with Juliette Cubanski, deputy director of KFF’s Program on Medicare Policy, June 16, 2024

Rand Corp., “Evaluation of the Part D Senior Savings Model,” May 2023

Republican Study Committee, “Fiscal Sanity to Save America,” March 20, 2024

Sanofi, “Sanofi Capping Its Insulin to a $35 Out-of-Pocket Costs in the U.S.,” June 1, 2023

Stat, “Biden and Trump Are Fighting To Claim Credit for $35 Insulin. It Was Actually a Pharma Giant’s Idea,” June 13, 2024

The White House, “FACT SHEET: President Biden’s Cap on the Cost of Insulin Could Benefit Millions of Americans in All 50 States,” March 2, 2023

The White House, “Remarks by President Biden and Vice President Harris at a Campaign Event | Philadelphia, PA,” May 29, 2024

The White House, “Remarks of President Joe Biden — State of the Union Address as Prepared for Delivery,” Feb. 7, 2023

Truthsocial.com, post by @realDonaldTrump, June 8, 2024

X.com, post by @justinbaragona, June 3, 2024

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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Before she stopped using drugs for good, Cierra Coon estimates that she overdosed eight times in a span of two weeks in the fall of 2022. One of those times, the opioid overdose reversal drug naloxone helped save her life.

She was riding in a car on the back roads of the Flathead Indian Reservation in western Montana when she lost consciousness. Someone in the car grabbed a small bottle of naloxone, sprayed it up her nose, and performed CPR until she came to. Coon said having quick access to the overdose reversal agent, also known by the brand name Narcan, was incredibly lucky.

“The times I wasn’t administered naloxone, it’s a miracle that I made it out,” Coon said. “People brought me back by shocking me with cold water and doing CPR. But that’s not a for-sure ‘I’m going to bring you back to life,’” Coon said.

Nearly two years later, Coon is a recovery coach for a local program, Never Alone Recovery Support Services, and earning a degree as an addiction counselor from Salish Kootenai College. She keeps doses of naloxone in her car in case she needs to help other people.

But, she said, she worries about the drug’s lack of accessibility, particularly in rural areas like her own. The state and tribal health departments’ distribution pipeline has been inconsistent, and the $50 price tag for a two-dose package of naloxone at the nearest Walmart puts it out of reach for many people.

“How are we supposed to afford this drug that’s ultimately to save the lives of ourselves and those around us?” she said.

Montana health officials are considering a new strategy to make naloxone more accessible. Drawing on a pool of behavioral health funds set aside by lawmakers in 2023, health officials within Gov. Greg Gianforte’s administration have proposed installing two dozen naloxone and fentanyl testing strip vending machines around the state at behavioral health drop-in centers and service locations for homeless people.

The $400,000 plan to build, stock, and maintain 24 vending machines for a year has not yet been approved by the governor, a Republican running for a second term, who ultimately decides how the funds allocated to the Behavioral Health System for Future Generations Commission are spent.

Details from the state’s Department of Public Health and Human Services about where the machines would be located and how they would be operated remain scarce.

The opioid-related death rate has tripled in Montana in recent years, from 3.6 deaths per 100,000 residents in 2017 to 11.3 per 100,000 residents in 2023. The death rate is higher among Native Americans: Native people in Montana died of opioid overdoses at a rate of 33 deaths per 100,000 people in 2023 — more than three times the rate for white people.

Naloxone has emerged as an important tool to combat opioid overdoses. When administered quickly, it attaches to receptors in the brain targeted by opioids, blocking the drugs’ effects.

Across the U.S., vending machines that distribute naloxone and other health supplies free of charge are becoming front-line features of the battle against opioid overdoses. Different versions of the model are being tried in at least 33 states.

In a 2023 report, the National Council for Mental Wellbeing described the use of vending machines to distribute naloxone and other “harm reduction” supplies — first-aid kits, pregnancy tests, sterile syringes, and more — as a public health tool that became more widespread during the social distancing era of the covid-19 pandemic. But the popularity of the model has continued to grow since, especially in places with hard-to-reach populations.

“They provide services to [people who use drugs] with far fewer barriers than fixed-site programs and even mobile outreach,” the report stated. Harm-reduction vending machines, it continued, “may also provide greater privacy and anonymity.”

The proposal from the state health department would be the first instance in Montana of vending machines being funded directly by the state, as opposed to the few now funded through public grants or private philanthropy.

Jami Hansen, prevention bureau chief for the state health department’s Behavioral Health and Developmental Disabilities Division, spoke about the proposal during a May meeting of the state behavioral health commission. She framed vending machines as a targeted way to fill gaps in a sparsely populated state that doesn’t offer consistent access to addiction treatment and naloxone.

“Having something available that they could utilize themselves would be very, very beneficial,” Hansen said.

Some local public health groups in Montana — including those in Missoula, Helena, Kalispell, and Big Horn County — have already begun using vending machines to distribute free naloxone, drug testing strips, and other health supplies. In Helena, three machines purchased by Lewis and Clark County have been distributing free Narcan nasal spray and safe drug disposal pouches — used to dissolve prescription and recreational pills — for more than a year.

Kellie Goodwin McBride, director of the county’s criminal justice services department, said her team originally tried to embed the machines within local businesses — a downtown bar, a laundromat, and a convenience store — but repeatedly struck out. Sometimes, there wasn’t enough space for the machines. In other cases, McBride said, owners worried that a Narcan vending machine would convey that the business condoned or welcomed drug use.

Instead, the county installed vending machines in a nonprofit drop-in center serving local homeless residents, the state district court building, and the Law and Justice Center downtown, which houses the municipal court and county sheriff’s department. That machine, McBride said, gets the most use.

Unlike some other models, the Narcan vending machines in Helena don’t require user registration or codes to access the materials inside, making it impossible to track who is taking naloxone or if it is being used. McBride and her team acknowledge there is no consistent way to know how many opioid-related deaths the vending machines have helped prevent.

Jessica Johnson is the health education supervisor at the Southern Nevada Health District, which helped create the first vending machine collaborative in the contiguous U.S. Johnson said the project was designed to distribute naloxone and sterile syringes to reduce the spread of infectious diseases among people who inject drugs. A 2022 study found 41 fewer overdose deaths than expected were recorded in Clark County, where the machines were located, during the first year of distribution.

Johnson said one of her takeaways from the program is the importance of listening to the community’s most at-risk people. The resulting harm-reduction kiosks or vending machines can look as diverse as the places they’re located.

Public health workers across the nation have added toothbrushes, tobacco-use cessation kits, and other supplies to their vending machines based on feedback from the populations they serve, Johnson said.

While organizational hosts have not yet been chosen, Montana health department spokesperson Jon Ebelt said the agency’s recommendation to place machines at drop-in centers and sites serving homeless people is based on a desire to reach people with serious mental illnesses and others who are already seeking services at those locations.

Ebelt confirmed the department did not reference opioid overdose data or demographic information about people who most often overdose in Montana when deciding where to place the machines. Rather, he said, the decision was “based on community-based programming and existing contracts with low barrier service sites.”

Under the proposal, Ebelt said, community hosts of the vending machines will be able to select many types of additional harm-reduction supplies to distribute, “as each community has different needs,” but sterile syringes will not be among the products available in Montana’s machines. The state plans to pay for one year of supplies, after which it may use federal grants to stock the machines, and federal funds may not be used to purchase syringes for illegal drug use. Ebelt did not respond to additional inquiries about that decision or whether sites would be able to add syringes and other materials supplied through independent funding.

This article was produced through a partnership between KFF Health News and Montana Free Press.

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The Tennessee government has agreed to begin scrubbing its sex offender registry of dozens of people who were convicted of prostitution while having HIV, reversing a practice that federal lawsuits have challenged as draconian and discriminatory.

For more than three decades, Tennessee’s “aggravated prostitution” laws have made prostitution a misdemeanor for most sex workers but a felony for those who are HIV-positive. Tennessee toughened penalties in 2010 by reclassifying prostitution with HIV as a “violent sexual offense” with a lifetime registration as a sex offender — even if protection is used.

At least 83 people are believed to be on Tennessee’s sex offender registry solely because of these laws, with most living in the Memphis area, where undercover police officers and prosecutors most often invoked the statute, commonly against Black and transgender women, according to a lawsuit filed last year by the American Civil Liberties Union and four women who were convicted of aggravated prostitution. The Department of Justice challenged the law in a separate suit earlier this year.

Both lawsuits argue that Tennessee law does not account for evolving science on the transmission of HIV or precautions that prevent its spread, like use of condoms. Both lawsuits also argue that labeling a person as a sex offender because of HIV unfairly limits where they can live and work and stops them from being alone with grandchildren or minor relatives.

“Tennessee’s Aggravated Prostitution statute is the only law in the nation that treats people living with HIV who engage in any sex work, even risk-free encounters, as ‘violent sex offenders’ subjected to lifetime registration,” the ACLU lawsuit states.

“That individuals living with HIV are treated so differently can only be understood as a remnant of the profoundly prejudiced early response to the AIDS epidemic.”

In a settlement agreement signed by Tennessee Gov. Bill Lee on July 15 and filed in both lawsuits on July 17, the Tennessee Bureau of Investigation said it would comb through the state’s sex offender registry to find those added solely because of aggravated prostitution convictions, then send letters alerting those people that they can make a written request to be removed. The language of the settlement suggests that people will need to request their removal from the registry, but the agency said in the agreement it will make “its best effort” to act on the requests “promptly in the order in which they are received.”

The Tennessee attorney general’s office, which represents the state in both the ACLU and DOJ lawsuits and approved the settlement agreement, said in an email statement it would “continue to defend Tennessee’s prohibition on aggravated prostitution.”

In an email statement, the ACLU celebrated the settlement as “one step toward remedying the harms by addressing the sex offender registration,” but said its work in Tennessee was not done because aggravated prostitution remained a felony charge that it would “fight to overturn.”

Molly Quinn, executive director of LGBTQ+ support organization OUTMemphis, another plaintiff in the ACLU lawsuit, said both organizations would help eligible people with the paperwork to get removed from the registry.

“We would not have agreed to settle if we did not feel like this was a process that would be extremely beneficial,” Quinn said. “But, we’re sad that the statute existed as long as it did and sad that there is any process at all that folks have to go through after living with this extraordinary burden of being on the sex offender registry for really an irrelevant reason.”

Michelle Anderson, a Memphis resident who is one of the plaintiffs in the ACLU lawsuit, said in court records that since being convicted of aggravated prostitution, the sex offender label has made it so difficult to find a home and a job that she was “unhoused for about a year” and has at times “felt she had no option but to continue to engage in sex work to survive.”

Like the other plaintiffs, Anderson said her conviction kept her minor relatives at a distance.

“Ms. Anderson has a nephew she loves, but she cannot have a close relationship with him,” the lawsuit states. “Even though Ms. Anderson’s convictions had nothing to do with children, she cannot legally be alone with her nephew.”

The Tennessee settlement comes months after state lawmakers softened the law so no one else should be added to the sex offender registry for aggravated prostitution. Lawmakers removed the registration requirement and made convictions eligible for expungement if the defendant testifies they were a victim of human trafficking.

State Sen. Page Walley (R-Savannah), who supported the original aggravated prostitution law passed in 1991 and co-sponsored the recent bill to amend it, said on the floor of the legislature that the changes do not prevent prosecutors from charging people with a felony for aggravated prostitution. Instead, he said, the amendments undo the 2010 law that put those who are convicted on the registry “along with pedophiles and rapists for a lifetime, with no recourse for removal.”

“Having stood, as I mentioned, in 1991 and passed this,” Walley said, “it is a particular gratifying moment for me to see how we continue to evolve and seek what’s just and what’s right and what’s best.”

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About every 12 minutes, someone is killed on America’s roads and countless others are injured.

More than 42,500 people died in car crashes in 2022, a death toll that rivals or surpasses those of other major public health threats, such as the flu and gun violence.

“We have not recognized that traffic violence is a preventable public health crisis,” said Amy Cohen, a co-founder of Families for Safe Streets.

Traffic-related injuries and deaths cost the health-care system more than $55 billion in 2022, according to the Centers for Disease Control and Prevention. And pedestrian deaths have spiked, reaching 7,522in 2022, the highest level in more than four decades, according to the federal government.

“The transportation system shouldn’t hurt us, and it shouldn’t harm the environment,” said Johnathon Ehsani, an associate professor at the Johns Hopkins Bloomberg School of Public Health who uses policy and behavioral research to try to prevent car crashes.

Transportation experts blame traffic deaths on more reckless driving and less traffic enforcement than before the coronavirus pandemic, combined with larger and deadlier SUVs and trucks. But they primarily fault a transportation system that was designed for efficient movement and economic development — not safety.

To reverse that, the Biden administration is looking to the “safe system approach,” a transportation strategy that has achieved piecemeal adoption across the country.

The approach puts safety at the core of road and vehicle design and transportation policies, forcing traffic to move more slowly through communities, Ehsani said.

This translates into lowering speed limits, narrowing roads and creating separate lanes for bicyclists, and more buffers for pedestrians. He said the approach also de-emphasizes cars — which make people more sedentary and cause air pollution — and boosts public transportation.

The Biden administration in 2021 injected more than $20 billion in funding for transportation safety programs through the Infrastructure Investment and Jobs Act.

Some states and localities are also taking steps.

New York and Michigan adopted laws this spring allowing local jurisdictions to lower speed limits, and voters in Los Angeles approved a resident-sponsored ballot initiative to redesign streets, invest more in public transportation, add bike lanes and widen sidewalks to protect pedestrians.

But in a country where cars are inextricably linked to the culture and economy, political resistance remains entrenched.

Stuck in the middle are people whose lives and health have been devastated. I visited a Latino working-class neighborhood in Los Angeles where I met María Rivas Cruz, who in February 2023 was struck along with her fiancé, Raymond Olivares, by a driver going 70 in a 40-mph zone.

Rivas Cruz was severely injured. Olivares died at the scene.

Residents had pleaded for years for lower speed limits, safety islands and more marked crosswalks. After the crash, the county installed protective steel posts midway across the street, which Rivas Cruz called a “band-aid.”

“There’s so much death going on,” said Rivas Cruz, who now at age 28 walks with a cane and lives with chronic pain. “The representatives have failed us.”

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Caitlyn Mai woke up one morning in middle school so dizzy she couldn’t stand and deaf in one ear, the result of an infection that affected one of her cranial nerves. Though her balance recovered, the hearing never came back.

Growing up, she learned to cope — but it wasn’t easy. With only one functioning ear, she couldn’t tell where sounds were coming from. She couldn’t follow along with groups of people in conversation — at social gatherings or at work — so she learned to lip-read.

For many years, insurers wouldn’t approve cochlear implants for single-sided deafness due to concerns that it would be hard to train the brain to manage signals from a biological ear and one that hears with the aid of an implant. But research on the detrimental effects of single-sided deafness and improvements in technique changed all that.

So Mai, now 27 and living near Oklahoma City, was thrilled last fall to get a prior authorization letter from her insurer saying she was covered for cochlear implant surgery.

She had successful outpatient surgery to implant the device in December and soon after was eagerly attending therapy to get her brain accustomed to its new capabilities.

“It was amazing. When I’d misplaced my phone and it rang, I could tell where the sound was coming from and find it,” she said.

Then the bill came.

The Patient: Caitlyn Mai, who is insured through her husband’s job by HealthSmart, which is owned by UnitedHealth Group.

Medical Services: Cochlear implant surgery, including the operating room, anesthesia, surgical supplies, and drugs.

Service Provider: SSM Health Bone & Joint Hospital at St. Anthony, an orthopedic hospital in Oklahoma City that is part of SSM Health, a Catholic health system in the central U.S.

Total Bill: $139,362.74 — or, with a “prompt pay discount” if she paid about two months after surgery, $125,426.47.

What Gives: Providers and insurers often have disagreements over how a bill is submitted or coded, and as they work through them (or don’t), the patient is left holding the bag, facing sometimes huge bills.

“I almost had a heart attack when I opened the bill,” Mai said of the first monthly missive, which arrived in late December. She said she was so upset she left work to investigate. Before surgery, “I’d even checked that all hospitals and doctors were in-network and that I’d met my deductible,” she said.

While she was never threatened with having her bill sent to collections, she said she worried about that possibility when the same bills arrived in January, February, and March, with ominous warnings that “your balance is now past due.”

Mai said she first called the hospital billing office but that the representative could tell her only that the claim had been denied and didn’t know why. She called her insurer, and a representative there said the hospital didn’t adequately itemize its charges or include billing codes. She then called the hospital back and relayed exactly what her insurer said must be done to rectify the bill — and the name and number of the insurance employee to fax it to.

When her insurer told her a week or two later it hadn’t received a corrected bill, Mai said, she called the hospital again … and again.

“I said, ‘I’ve done your job for you — now can you please take it from here?’” she said.

Mai said a hospital staffer promised to fax over the corrected, itemized bill in two to three weeks. “How does it take that long to send a fax,” she wondered. She said she asked to speak with a supervisor and was told the person wasn’t available but would call her back. No one did.

After receiving another $139,000 bill in late February, Mai said, she checked back in with her insurer, but a representative said it had not yet received the revised bill.

Finally, she said, she told the hospital to “just send it to me and I’ll send it over.” This time, she forwarded the bill to her insurer herself. But in late March she got another bill demanding the full amount — and offering an $11,000-a-month payment plan.

Mai said she had met her out-of-pocket deductible and, with prior authorization in hand, expected the surgery to be fully covered.

SSM Health did not respond to multiple requests for comment about why it billed Mai.

“It’s outrageous that the patients end up umpiring the decisions,” said Elisabeth Ryden Benjamin, vice president of health initiatives at the Community Service Society of New York, an advocacy organization. “And it’s outrageous that providers are allowed to bill patients while they’re haggling with the insurer.”

Indeed, more and more patients are stuck with such bills as insurers and hospitals spend more and more time arguing in the trenches, data shows. A recent report by Crowe, an accounting firm that works with a large number of hospitals, found that more than 30% of claims submitted to commercial insurers early last year weren’t paid for more than 90 days — striking compared with the lower rates of such delays in Medicare, which were 12% for inpatient claims and 11% for outpatient claims.

The Crowe report found a particular justification for denying claims was cited at 12 times the rate by commercial insurers as by Medicare: that they needed more information before they would process the submission. Such a request allows insurers to sidestep laws in most states that require claims be paid in 30 to 40 days, automatically granting health plans the right to delay payment.

In a separate analysis, the American Hospital Association complained that increases in insurance denials and delays “strain hospital resources” and “inhibit medically necessary care.”

More from Bill of the Month* It’s Called an Urgent Care Emergency Center — But Which Is It?Jun 24, 2024 * He Fell Ill on a Cruise. Before He Boarded the Rescue Boat, They Handed Him the Bill.May 22, 2024 * Sign Here? Financial Agreements May Leave Doctors in the Driver’s SeatApr 30, 2024

More from the seriesBut perhaps no one is harmed as gravely as the patient, who is barraged with bills and believes they must pay up — particularly when the missives are stamped “past due” and contain offers of prompt-payment discounts or no-interest payment plans. “The stress and anxiety was huge,” Mai said.

Caroline Landree, a spokesperson for UnitedHealth Group, said the insurer could pay Mai’s claims only “after receiving a detailed bill from her provider.”

“We encourage our members to contact the number on their insurance cards for more information on the status of payments,” she added.

The Resolution: Mai estimated she spent at least 12 hours on the phone doing tasks that typically fall to someone working in a hospital billing department: making sure the bill was coded as needed and that the insurer had what it wanted to process the payment.

More than 90 days after her surgery, after Mai had received four terrifyingly huge bills, her insurance finally paid the claim. Mai owed nothing more.

She added: “I’ve never got that call back from a supervisor to this day.”

The Takeaway: It’s not uncommon for an insurer to delay paying a claim until it receives an itemized bill; providers sometimes get creative with billing codes to increase revenue, and studies show that more than half of hospital bills contain errors. But studies also suggest insurers are wont to drag their feet, niggling over coding and charges — and, in doing so, delaying reimbursement and holding on to the cash.

Medical billing experts say it may not seem right for patients to receive bills as this process plays out but that it’s probably legal.

“Laws say ‘hold the patient harmless,’” Benjamin said. “What we didn’t say is, ‘Don’t send them a bill.’” She said it is also unfair that patients may be forced to act as the go-between for providers and insurers who should be talking to each other.

What’s a patient to do? First step: Don’t pay the bill (aside from a copay or coinsurance) for care or services preapproved by insurance. Call the health care provider and explain they should take up their bill with the insurer.

Second, ask the provider to send an itemized bill with all billing codes used, then review it for errors. As the patient, you would know that you never had an MRI, for example. Your insurer wouldn’t.

If submissions to “Bill of the Month” are reflective of trends, many patients these days are finding themselves ping-ponging between representatives for providers and insurers to get bills resolved and paid.

“Bravo for Ms. Mai for having the energy to keep at it and get resolution,” Benjamin said.

Dan Weissmann reported the audio story.

Bill of the Month is a crowdsourced investigation by KFF Health News and NPR that dissects and explains medical bills. Do you have an interesting medical bill you want to share with us? Tell us about it!

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Just after lunchtime on June 18, Massachusetts’ leaders discovered that the statewide 911 system was down.

A scramble to handle the crisis was on.

Police texted out administrative numbers that callers could use, Boston Mayor Michelle Wu gave outage updates at a press conference outlining plans for the Celtics’ championship parade, and local officials urged people to summon help by pulling red fire alarm boxes.

About 7 million people went roughly two hours with no 911 service. Such crashes have become more of a feature than a bug in the nation’s fragmented emergency response system.

Outages have hit at least eight states this year. They’re emblematic of problems plaguing emergency communications due in part to wide disparities in the systems’ age and capabilities, and in funding of 911 systems across the country. While some states, cities, and counties have already modernized their systems or have made plans to upgrade, many others are lagging.

911 is typically supported by fees tacked on to phone bills, but state and local governments also tap general funds or other resources.

“Now there are haves and have-nots,” said Jonathan Gilad, vice president of government affairs at the National Emergency Number Association, which represents 911 first responders. “Next-generation 911 shouldn’t be for people who happen to have an emergency in a good location.”

Meanwhile, federal legislation that could steer billions of dollars into modernizing the patchwork 911 system remains waylaid in Congress.

“This is a national security imperative,” said George Kelemen, executive director of the Industry Council for Emergency Response Technologies, a trade association that represents companies that provide hardware and software to the emergency response industry.

“In a crisis — a school shooting or a house fire or, God forbid, a terrorist attack — people call 911 first,” he said. “The system can’t go down.”

The U.S. debuted a single, universal 911 emergency number in February 1968 to simplify crisis response. But instead of a seamless national program, the 911 response network has evolved into a massive puzzle of many interlocking pieces. There are more than 6,000 911 call centers to handle an estimated 240 million emergency calls each year, according to federal data. More than three-quarters of call centers experienced outages in the prior 12 months, according to a survey in February by NENA, which sets standards and advocates for 911, and Carbyne, a provider of public safety technology solutions.

In April, widespread 911 outages affected millions in Nebraska, Nevada, South Dakota, and Texas. The shutdown was blamed on workers’ severing a fiber line while installing a light pole.

In February, tens of thousands of people in areas of California, Georgia, Illinois, Texas, and other states lost cellphone service, including some 911 services, from an outage.

And in June, Verizon agreed to pay a $1.05 million fine to settle a Federal Communications Commission probe into a December 2022 outage that affected 911 calls in Alabama, Florida, Georgia, North Carolina, South Carolina, and Tennessee.

The fires that raced across the Hawaiian island of Maui last August highlighted the critical importance of 911 systems. Dispatchers there fielded more than 4,500 contacts, meaning calls and texts, on Aug. 8, the day the fires broke out, compared with about 400 on a typical day, said Davlynn Racadio, emergency services dispatch coordinator in Maui County.

“We’re dying out here,” one caller told 911 operators.

But some cell towers faltered due to widespread service outages, according to county officials. Maui County in May filed a lawsuit against four telecommunications companies, saying they failed to inform dispatchers about the outages.

“If 911 calls came in with no voice, we would send text messages,” Racadio said. “The state is looking at upgrading our system. Next-generation 911 would take us even further into the future.”

Florida, Illinois, Montana, and Oklahoma passed legislation in 2023 to advance or fund modernized 911 systems, according to the National Conference of State Legislatures. The upgrades include replacing analog 911 infrastructure with digital, internet-based systems.

Instead of just fielding calls, next-generation systems can pinpoint a caller’s location, accept texts, and enable residents in a crisis to send videos and images to dispatchers. While outages can still occur, modernized systems often include more redundancy to minimize the odds of a shutdown, Gilad said.

Lawmakers have looked at modernizing 911 systems by tapping revenue the FCC gets from auctioning off the rights to transmit signals over specific bands of the electromagnetic spectrum.

But the U.S. Senate, in March 2023, for the first time allowed a lapse of the FCC’s authority to auction spectrum bands.

Legislation that would allocate almost $15 billion in grants from auction proceeds to speed deployment of next-generation 911 in every state unanimously passed the House Energy and Commerce Committee in May 2023. The bill, HR 3565, sponsored by Rep. Cathy McMorris Rodgers (R-Wash.), would also extend the FCC’s auction authority.

Other bills have been introduced by various lawmakers, including one in March from Sen. Ted Cruz (R-Texas) and legislation from Sen. Maria Cantwell (D-Wash.) to extend the auction authority. For now, neither effort has advanced. Nine former FCC chairs wrote lawmakers in February, urging them to make 911 upgrades a national priority. They suggested Congress tap unspent federal covid-19 money.

“Whatever the funding source, the need is urgent and the time to act is now,” they wrote.

Ajit Pai, who served as chair of the FCC from 2017 to 2021, said outages often occur in older, legacy systems.

“The fact that the FCC doesn’t have authority to auction spectrum is a real hindrance now,” Pai told KFF Health News. “You may never need to call 911, but it can make the difference between life and death. We need more of an organized effort at the federal level because 911 is so decentralized.”

Meanwhile, some safety leaders are making backup plans for 911 outages or conducting investigations into their causes. In Massachusetts, a firewall designed to prevent hacking led to the recent two-hour outage, according to the state 911 department.

“Outages bring to everyone’s attention that we rely on 911 and we don’t think about how we really rely on it until something happens,” said April Heinze, chief of 911 operations at NENA.

Mass General Brigham, a health system in the Boston area, sent out emergency alerts when the outage happened letting clinics and smaller practices know how to find their 10-digit emergency numbers. In the wake of the outage, it plans to keep the backup numbers next to phones at those facilities.

“Two hours can be a long time,” said Paul Biddinger, chief preparedness and continuity officer at the health system.

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Hospital facility fees. They can feel like a charge just for walking in the door. Hospitals say they go toward overhead on facilities with lots of specialized equipment and staff, like emergency rooms.

But these fees have grown and become more common in recent years. And as hospitals buy up outpatient facilities, patients are starting to get charged facility fees for routine tests, procedures, and visits to the doctor’s office.

In this episode of “An Arm and a Leg,” host Dan Weissmann speaks with Georgann Boatright, a retired speech pathologist from Oxford, Mississippi, who was told by her local hospital that she needed to pay an $8,000 “operating room fee” for a routine test. She was determined not to get overcharged, even if it meant driving hours out of state to get the test someplace cheaper.

Dan Weissmann@danweissmannHost 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.CreditsEmily PisacretaProducerClaire DavenportProducerAdam RaymondaAudio wizardEllen WeissEditorClick to open the TranscriptTranscript: The Woman Who Beat an $8,000 Hospital FeeNote: “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! A couple of months ago, we asked you to help us report on a type of fee that seems to be sneaking onto more and more medical bills. They’re often called “facility fees.” It’s like a cover charge just for walking in the door. And these kinds of fees are familiar to a lot of folks from places like emergency rooms, which do have a LOT of specialized equipment and staff in the facility behind that door. That’s basically the case for a cover charge: Once you get in the door, there’s a lot of stuff there. But in some cases, with facility fees, the door is just the entrance to a doctor’s office. Because facility fees– they’re often charged by hospitals. And hospitals own a lot of doctors’ offices these days. And once they take over, there’s no law that says they can’t just call that doctor’s office part of their facility and start charging.

We asked what you’d been seeing. A bunch of you sent us stories, and copies of your bills, and your insurance statements. And when we called to follow up, you took our calls. You had A LOT to say.

Teresa: Oh, it made me so mad, so mad. Anne: I mean, it’s a 10-minute appointment for a prescription.

Amanda: I don’t understand any of it. Where did this number come from?

Dan: We learned a bunch. Especially from those of you who are not new to this kind of thing.

Francesca: It was a running joke with my husband and myself that like, okay, it’s time for my weekly, one-to-two hour phone call with Cigna.

Dan: People who’ve been contending with the health care system for a while, dealing with chronic illnesses, or going to the doctor for monitoring, or having some kind of ongoing treatment.

Anne: I see her once a year. I’ve seen her once a year for 18 years at the time. And then they started charging the facility fee.

Dan: And I’ve always said here, we have a lot to learn from each other. And what we learned here is a lot more than is gonna fit in one episode. So we’re gonna start here with one story that really stood out. Partly because it involved the biggest dollar amount we saw: An eight-thousand dollar facility fee. And partly because the person we heard from … didn’t end up paying it. And partly because of what it took for her to avoid paying it. She had what I might call a lifetime of preparation– including lessons I think a lot of us can learn from. And she has the kind of grit that not all of us have. But I’m hoping that some of it might rub off. So let’s meet her.

Georgann Boatright: My name is Georgann Boatright, and I am a retired speech pathologist.

Dan: Georgann lives in Oxford, Mississippi. She works for the university there, Ole Miss, coordinating special events.

Georgann Boatright: It’s lots of fun. Never a dull moment. Everything from weddings to conferences.

Dan: The day we talked, she had made coffee for 500 people. Before eight am. And here’s how she describes her response to that eight-thousand dollar charge.

Georgann Boatright: I was like, that’s insane. And of course, being the obnoxious human being that I can be at times, and a little bit pushy, you know; sometimes you got to do that. I’ve always been that advocate for everybody else, so sometimes I have to advocate for me.

Dan: Georgann pushed back– we will talk about how far she had to go. And among other things, we’re talking about actual miles she had to travel. It was not easy. But it was worth it. Let’s take a ride.

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 the job we’ve chosen here 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.

Georgann Boatright grew up in Oxford, went to Ole Miss– the University of Mississippi, right in town. And after a decade and change in places like Huntsville, Arkansas, and towns near Springfield, Missouri, she moved back to Oxford about 15 years ago.

Georgann Boatright: My mom came ill. And so I moved back to Mississippi to be with her for the end.

Dan: Georgann herself had a health scare not long after– it turned out to be a non-cancerous tumor. Her local doctors couldn’t figure out the problem, but she found good treatment at West Cancer Center in Memphis, about an hour and a half away. And then, in 2022, an actual breast cancer diagnosis. She went back to the West Cancer Center in Memphis for treatment. And while she was being treated for breast cancer, her doctors found a thyroid problem.

Georgann Boatright: But they were kind of like, okay, we’ll put that on a back burner for right now because we got to take care of this first.

Dan: So, they did! And you know, that took months, of course. Once she was done– and no evidence of cancer for a few months!– they picked up the thyroid thread. Her endocrinologist in town suggested what’s called a needle biopsy: no incision, just pulling a sample with basically a syringe, guided by ultrasound. And Georgann was plenty familiar with the procedure because she’d had two of them for her breast cancer.

Georgann Boatright: Well, of course, having just done all this other stuff, I was kind of like, oh, okay, just another biopsy. No big deal.

Dan: Her endocrinologist suggested the local hospital, Baptist Memorial, North Mississippi. And started getting her scheduled there.

Georgann Boatright: I was just sitting in my office doing my thing and, you know, answering emails, trying to get people to sign up and do a wedding. So, they called me and said, “Hey, you know, we need a thousand dollars up front.” And I’m like, why? I’ve already met my deductible. Da, da, da. You know, and they’re like, Oh, well, this is just this is just your copay.”

Dan: None of this sounded right to Georgann, based on her experience.

Georgann Boatright: I’d had two biopsies done in the past year, just in the process of doing the breast stuff. And I was like, that’s not normal.

Dan: At the cancer center in Memphis, a thousand dollars was in the ballpark for the whole procedure, like before insurance paid anything. And Georgann’s share, after insurance, was like a fraction of that.

Georgann Boatright: And I went, excuse me, because of course I was expecting, you know, under a hundred bucks, you know. And they acted very offended that I questioned. She was like, “Well, this is standard.” And I was like, “But I’m confused,” and, you know, and the more questions, she got kind of defensive.

Dan: Georgann says she quickly developed a little sympathy for the woman on the other side of the call.

Georgann Boatright: I was like, this person has no clue. This is their job. They’re given this information. They’re given my phone number. They’re told to collect a thousand dollars from me. You know, I mean, it’s not her fault.

Dan: So, Georgann quickly made a new plan. First step: get a line-item version of that estimate, in writing. And next: find somebody else to talk with.

Georgann Boatright: I was like, “Well, hey, how about you just do me a printout and I’ll come by the hospital and pick that up. If you’ll just leave it with somebody near the desk …”

Dan: … Then Georgann figured she can actually see what these charges are for and you know, maybe talk to somebody who’ll know a little more. She went that same day.

Georgann Boatright: I wanted to get the biopsy done. I wanted to find out what was going on. You know, once you’ve had cancer, it kind of, that C word just does not sit well with your brain. You kind of, it starts eating at you and you’re like, I really want to know.

Dan: And she wanted to know why the hospital wanted a thousand dollars from her. She got that printout– the line item estimate. It showed thirteen thousand dollars in charges. And the single biggest charge– more than half of the whole bill– eight thousand dollars– was for an “operating room” charge. It wasn’t labeled “facility fee,” but that’s exactly what it was. Georgann sent us this line-item estimate. We showed it to a medical-bill coding expert; she confirmed– this is a facility fee. And I’ll just mention again: Of all the people who sent us bills with facility fees on them, this was the highest by a LOT. Alot a lot. And seeing this “operating room” charge really set off alarm bells for Georgann. Because Georgann had just had TWO needle biopsies. And they sure as heck had not taken place in an operating room.

Georgann Boatright: It’s a needle aspiration. It is ultrasound-guided. So it’s done in radiology. This is not in an operating room.

Dan: When she got to Baptist, Georgann did get to talk in person with a billing specialist. It wasn’t a satisfying heart-to-heart, but it gave Georgann the clarity she needed.

Georgann Boatright: At a certain point in the conversation, I was just kind of like, “You do realize that there is not an operating room involved in this?” And she said, “Well, of course, there is.” I was like, “No, there really isn’t.” “Oh, well, that’s just our standard procedure.” And so she stuck with that. And so I was like, okay, well, since you’re going to just stick with this, I’m going to just let this go. Because if I can’t seem to get you to understand that I’m not going to pay you 8,000 dollars for an operating room that I’m not going to go in, we’re not going to get anywhere.

Dan: And Georgann knew she had an alternative: She could go back to the cancer center in Memphis. It was a bit of a drive, but she trusted them to do good work and not to overbill her. So that’s what she did. Her out of pocket cost was eighty dollars. We asked Baptist all about Georgann’s experience, and what was behind this eight-thousand dollar charge. Especially since medical and surgical supplies were listed as separate line items.

A hospital spokesperson wrote back: “The price a patient sees on the hospital bill also reflects all the people who care for them and keep the hospital operating, not just the services provided, such as nurses and caregivers at the bedside, pharmacists, lab technicians, food service staff, environmental service professionals and security personnel who, among many others, keep the hospital running 24/7. We believe we charge fair and reasonable prices for our expert care.”

Of course, we also asked Baptist why there would be an operating room charge at all, when the patient didn’t expect to be seen in an operating room. The spokesperson wrote back: “I’m not sure why there was a discrepancy. But, in general, the pricing information we share with patients is only an estimate, and the final bill can vary. We encourage patients to contact us with any questions.” OK, then. And I just want to say: I think– well, I KNOW– that I’ve undersold what it took for Georgann to make that decision. I mean, yeah, we’ve seen, Georgann showed a lot of initiative, and savvy, and decisiveness, and a certain amount of grace in navigating a couple of conversations with her local hospital’s billing department. But we haven’t seen EXACTLY what made her so prepared for those conversations, and to make her decision so quickly. And if we’re gonna learn from Georgann’s example, we’ve gotta look at that. That’s coming right up.

This episode of An Arm and a Leg is a co-production of Public Road Productions and KFF Health News. Public Road is the organization I founded to make this show. The name comes from Walt Whitman; I’ll tell you about it sometime. KFF Health News is a nonprofit newsroom covering healthcare in America. Their journalists do amazing work– win all kinds of awards, every year. I’m honored to work with them. So, what allowed Georgann Boatright to navigate those conversations with her hospital billing department so skillfully? And to quickly decide to drive to another city for care? Well, let’s start with her old job as a speech pathologist. You might remember, when she did that job, she was living in places like Huntsville, Arkansas. Or, as Georgann describes it …

Georgann Boatright: … Absolutely the middle of nowhere, Arkansas.

Dan: It’s not like a speech therapist is gonna have a ton of clients in town. Georgann worked for an agency that sent her all over the place.

Georgann Boatright: I was driving about three- to five-hundred miles a day when I retired.

Dan: A day!

Georgann Boatright: Yeah, well, they’re spread a little thin in that area.

Dan: Yeah. Yeah. Right. How fast were you driving? Like, how many hours are we talking about being on the road?

Georgann Boatright: I was usually on the road 12 to 14 hours a day.

Dan: Oh my god.

Georgann Boatright: Yeah, but that’s because, you know, I was bouncing in and out everywhere from Liberty, Missouri, which is outside of Kansas City, all the way down into Arkansas.

Dan: So, we start to get the idea that driving an hour and a half from Oxford to Memphis is, you know, not such a big deal to Georgann. But there’s this other thing. Which is what Georgann spent all those hours in her car actually doing. Because she was not listening to podcasts, I can tell you that. She was dealing with health insurance. On behalf of her colleagues and her patients.

Georgann Boatright: I was the person in our company that would do all the appeals. I got really good at getting Medicare, Medicaid, Blue Cross Blue Shield– all the insurances to pay.

Dan: Georgann did all this by phone, with somebody back at the home office transcribing for her. It was part of her gig– because she had all that time in the car. The agency she worked with also employed physical therapists and occupational therapists, sending them out to nursing homes. And those colleagues would have multiple appointments a day at the same spot.

Georgann Boatright: I would only have like, maybe one or two patients during the course of the day, and then I would end up doing paperwork the rest of the day or helping someone else do paperwork.

Dan: Because not only did Georgann have time with all those hours in the car. She had something else: language skills.

Georgann Boatright: The crew that I worked with, they were mostly from the Philippines, and we partied very well. And I ate a lot of good food, and I gained weight. And no fault of their own, English wasn’t their first language. So that was part of my job was to make sure that the language barrier wasn’t the problem for the physical and occupational therapists getting paid.

Dan: So for five years, she spent most of her long workday dealing with insurance.

Georgann Boatright: That was what I did, and I was really, really good at it. You know, when you get on a first name basis with the reps in your area, you know that you’re a thorn in their side. When they would see my name, they’d be like, “We might as well just go ahead and pay this one because she’s going to find a way to get it through.”

Dan: So when Georgann ended up talking with those folks at her local hospital’s billing office– the folks who were trying to tell her that an eight-thousand-dollar operating-room fee was just standard– she had a pretty good idea of what their jobs were: Just getting the hospital’s money.

Georgann Boatright: I get that. And I understand that, but you know, you have to understand when you’re calling people and asking them for money that you have to know why they’re paying you money and whether or not you can justify how much they’re paying you.

Dan: So, just to recap: When Georgann was in those conversations with the local hospital billing department, she had years and years of experience in medical billing. She was, by her account, really really good at it. It doesn’t seem like a stretch to guess that when she talked with these folks at the local hospital’s billing department, she knew a lot more about medical billing than they did. And she knew that this hospital wasn’t her only option. She had just done cancer treatment at West Cancer Center in Memphis. She trusted them, and they hadn’t overbilled her. And she wasn’t afraid of a road trip. That 300-mile, 500-mile-a-day job was a while ago, but just in the last year she’d made the trek to Memphis for cancer treatments, several times. In fact, the story of the wrap-up to that treatment gave me real appreciation for Georgann Boatright’s brand of cheerful grit and determination. For more than a year, Georgann had been planning a big family reunion for Christmas: Her kids, their kids, gathered from across the country, to a lodge near her husband’s mom.

Georgann Boatright: I wanted his mom who has been getting on in age to get a chance to see the great grands and this kind of stuff.

Dan: Georgann had made the reservation for the lodge months before her cancer diagnosis. And then, the last day of her radiation treatment got scheduled for December 23. The reunion was scheduled to start that very night. In Branson, Missouri– a five-hour drive from Memphis.

Georgann Boatright: And I was like, I am not canceling this. Everybody’s like, “Mom, you don’t have to do this,” blah, blah, blah. I was like, “No, I’m going to be healthy and done with this treatment. By the time of this reservation.” I said, “I don’t care what happens!”

Dan: The procedure that last day was to remove a device that had been delivering targeted radiation doses. And when the day came, an ice storm knocked out the power at West Cancer Center. The medical staff suggested, you know, rescheduling.

Georgann Boatright: They’re like, “Well, do you want to come … No! I want this done. I am not coming back tomorrow.

Dan: Wow.

Georgann Boatright: I am going to make this reservation. I’m going to spend the night in a very nice place in Branson, Missouri and play in the snow.

Dan: It wasn’t gonna be easy.

Georgann Boatright: There was no power. There was no lights. There was only the little emergency generator lights that come on in a hospital.

Dan: But they made it work.

Georgann Boatright: I had it taken out that day. By the flashlights of the nurses

Dan: The flashlights on the nurses phones! Georgann says she slept in the car while her husband drove them to Branson that day. Mission accomplished.

Georgann Boatright: It was a great trip, and everybody was there, and it was wonderful to kind of celebrate at the end of that. I was done with radiation. I was like, I’m going to get well now and just keep kicking cancer’s butt. Because I was like, I am not giving up.

Dan: I said right at the top: This story is epic, right? And I said that whatever’s powering Georgann Boatright, I hope just a little bit of it can rub off on us– on me. So, when Georgann talked with the folks in the billing department at her local hospital, she knew just what she was capable of. Also, it’s worth mentioning, she knew she had some other things that not everybody has: She knew she had excellent insurance because she’d seen it at work when she got the bills for her breast cancer treatment. And she knew she had someone to drive her to Memphis and back. Uber? That would’ve cost a LOT. Actually, Georgann says she priced it recently for her job.

Georgann Boatright: It’s 145 dollars, and I was like, you got to be kidding me!

Dan: I believe I could fly to Memphis from Chicago for 145 dollars one way.

Georgann Boatright: I could get a flight to Southwest for 120. Believe me, I do it. That’s my thing. If I do it during the week, I can go from here to Midway. Yeah.

Dan: Wait, why is flying to Chicago’s Midway airport Georgann’s thing? Well, the answer actually relates to one more thing Georgann had going for her in this whole scenario. Something– someone– I left out before.

Melissa McChesney: My name is Melissa McShesney. I live in Chicago, Illinois.

Dan: Melissa is Georgann’s daughter. She is the mom of two of Georgann’s grandkids. Melissa’s brother– dad to three more grandkids– he also lives in Chicago. Those kids and grandkids are, all of them, the reason Georgann has that airfare at the tip of her tongue. But it’s Melissa who plays a role in this story. Because Melissa works for CMS, the Centers for Medicare and Medicaid Services– the federal agency that oversees Medicaid and Medicare. So health insurance is her job. I mean, at least government-funded insurance.

Melissa McChesney: I only know enough to be dangerous on the private side. But, you know, I have colleagues that know a lot more.

Dan: Melissa and her mom– two health-insurance experts– can back each other up.

Melissa McChesney: It’s always great to have another set of eyes. So, sometimes I call her, sometimes she calls me.

Dan: This time– after those conversations with the hospital billing department– it was Georgann who did the dialing.

Melissa McChesney: She called me to say, “This doesn’t make any sense. Why is this the most expensive procedure I’ve seen in a year when I just went through breast cancer treatment? At least from the out-of-pocket cost. And I quite frankly didn’t fully know either.

Dan: So some poking around led Melissa to a story from the Bill of the Month series our pals at KFF Health News do with NPR.

NPRHost: For our September bill of the month, we’re taking a close look at facility charges …

Dan: And this story was a pretty exact match with Georgann’s situation: An operating room charge for a needle biopsy. NPR’s website even had a PDF of the original bill, with the billing codes.

Melissa McChesney: Which was very helpful, actually, because I was able to see the fee that the article was focused on. And I was like, “This is the exact same thing, mom.”

Dan: And that bit of context? It confirmed for Georgann that she could trust her initial impression: That this “operating room” fee seemed out of whack. And that she could do better. So she had that biopsy at West Cancer Center in Memphis before the week was out. And good news: She’s OK! The biopsy came back benign. Her local endocrinologist has been monitoring her bloodwork.

Georgann Boatright: And so right at the moment, my thyroid levels are all staying normal. So they’re not concerned that it’s throwing off everything unless it becomes like a huge thing that grows in my neck.

Dan: And she gets an occasional ultrasound at a local clinic. No needle, no hospital, no facility fees– and keeping an eye on the bills.

Georgann Boatright: They have been very reasonable. That’s why I was like, okay, well I’ll continue doing this as long as y’all don’t screw me over anymore.

Dan: One last thing I should tell you about Georgann and how she handled that eight thousand dollar charge the hospital had wanted: This is something she did after her daughter Melissa sent her that NPR story– you know, the one that helped her decide she was definitely going to Memphis. Melissa’s got this part of the story.

Melissa McChesney: She sent the NPR article and her estimate to her endocrinologist and said, “Just so you know, this is what happens when you refer individuals to this hospital. And you know, it would cost them a lot of money.” I was so proud of her for doing that. it just speaks to my mom and trying to be a person who’s not just worried about her own experience, but the experience of others in her community.

Dan: I’m telling you, we all want some of Georgann Boatright to rub off on us.An ArmandaLeg Season 12, Episode 1 July, 11, 2024 p.14 You sent us SO MANYstories about facility fees. I hope you can see why we wanted to bring you this one first, but we are not done. We talked with a bunch of you– and we talked with some experts who gave us some insights … and some lessons.

Shelley Safian: Sometimes you talk to the physician, sometimes you talk to the facility, sometimes you got to go to the president and say, “You know what? This is not right.”

Dan: And we talked to experts who gave us a look at what policy makers all over the country are doing– or trying to do– about these fees. Because they’re definitely paying attention. Because a lot of people are recognizing: You should not need to be Georgann Boatright to find a way around fees like this. Most of us aren’t.

Christine Monahan: There’s bipartisan interest in this issue. We are seeing these reforms bubble up across the states.

Dan: So over the next couple of months, we’ll be sharing a LOT more of what you’ve been helping us learn. Meanwhile, because you’ve been so incredibly helpful here, I’m going to come back to you soon asking for more help on a different story. That’s coming next time. Till then, take care of yourself.

This episode of An Arm and a Leg was produced by Emily Pisacreta and Claire Davenport, with help from me, Dan Weissmann, and edited by Ellen Weiss. Adam Raymonda is our audio wizard. Our music is by Dave Weiner and Blue Dot Sessions. Gabrielle Healy is our managing editor for audience. Gabe Bullard is our engagement editor. Bea Bosco is our consulting director of operations. Sarah Ballama is our operations manager.

An Arm and 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. They allow us to accept tax-exempt donations. You can learn more about INN at INN.org.

Finally, thank you to everybody who supports this show financially. You can join in any time at https://armandalegshow.com/support/. Thanks so much for pitching in if you can– 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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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 largest private company that brokers use to enroll people in Affordable Care Act health plans said it’s joining with insurers to thwart unauthorized Obamacare sign-ups and plan switches.

HealthSherpa, which has its own sales team, announced the new initiative — called “Member Defense Network” — July 16. It will cut off commissions for unscrupulous insurance brokers believed to be signing up thousands of Americans for health plans they don’t need or switching their coverage without express consent.

Federal regulators say at least 90,000 Obamacare customers have complained about unauthorized enrollments or plan switches in the first quarter of the year. The changes can leave consumers without access to their preferred doctors and increase their deductibles or saddle them with tax bills.

Amy Shepherd of Georgia said that while the carrier of her ACA plan has remained the same, the agent who collects the commission has been switched three times — all people she doesn’t know and without her consent. Even worse, she said, are the multiple calls she gets daily, at all hours, from other agents apparently trying to persuade her to switch plans.

“These spam calls are stressing me beyond words,” said Shepherd, who wants to remain in her current plan and has enlisted the help of a friend, who happens to be an insurance agent, to help.

Whether the network would help in situations like Shepherd’s remains to be seen. When duplicative enrollments are identified, it will use automation to check whether agents have filed written or recorded consent by the consumer, something they are supposed to do under federal rules. But agents say they are rarely asked to provide those documents by regulators.

If there’s no valid consent on file, or if an agent is caught submitting fake consents, they’re not going to get paid commissions while the situation is investigated, said George Kalogeropoulos, CEO of HealthSherpa. The firm has set up a website separate from its enrollment platform to run the network, and it may spin it off to another organization, he added.

HealthSherpa is one of more than a dozen private sector web brokers allowed by federal regulators to directly link to the federal health insurance marketplace, healthcare.gov, to sign people up for ACA coverage. Other web brokers can join the new program, Kalogeropoulos said.

But there are already doubts about HealthSherpa’s plan. Without all health insurers participating, some agents said, fraudulent enrollment may shift to those remaining outside HealthSherpa’s program. At its launch this week, the network included health insurers Ambetter, Molina Healthcare, and Highmark Blue Cross Blue Shield, representing about half the people who selected coverage during the ACA’s most recent open-enrollment period, said Kalogeropoulos, and more may follow.

Smaller brokerages worry that HealthSherpa’s algorithms may incorrectly flag transactions with their customers as suspicious.

“This could disrupt the market,” said Ronnell Nolan, president of Health Agents for America, a trade group. “This could put good agents out of business.”

Federal regulators say they are working on several regulatory and technical ways to address unauthorized sign-ups and switches but have released few details. Last week, the Centers for Medicare & Medicaid Services quietly put in place new rules requiring agents to log in to their own ACA enrollment accounts every 12 hours, instead of every 30 days, as a security measure.

CMS knows of the network initiative and said it will be required to conform to security and privacy standards.

“We expect and encourage all of our partners, including issuers, direct enrollment partners, and agents and brokers, to take steps to detect and prevent fraudulent actions against consumers,” said Jeff Wu, deputy director for policy at the Center for Consumer Information and Insurance Oversight, in a written statement.

Under HealthSherpa’s plan, participating Obamacare insurers will each day submit data on all plan changes and new enrollments. Then the network’s software will look for duplicate enrollments or other suspicious patterns across carriers — which can’t currently be done by the private sector — and automatically verify that agents have filed proof of consumer consent.

Most situations would be resolved without the need for human intervention, said Kalogeropoulos — unless the system discovers fake consent. Those cases would be reported to federal and state regulators.

Private sector enrollment sites like HealthSherpa help millions of people legitimately in ACA plans each year. Most brokers use such platforms as an alternative to what they consider the more clunky healthcare.gov site, yet they also complain that the private enrollment websites make fraud too easy. Armed with nothing more than a name, date of birth, and state of residence, unscrupulous insurance agents can switch healthcare.gov customers’ insurance plans or change the authorized agent on their policies to collect commissions from insurers.

“No other industry works this way,” said Arthur Barlow, CEO and president of Utah-based Compass Insurance Advisors. His firm, which includes 500 independent agents, supports the ideas behind HealthSherpa’s Member Defense Network, which he called “a step in the right direction to have a third party validate consent.”

More efforts to address the problem of easy access to healthcare.gov accounts are needed, said Aaron Arenbart, the ACA/Medicare director at DigitalBGA, an Austin, Texas-based firm that assists brokers.

He’s skeptical that HealthSherpa’s network is the answer, however. He’d rather see federal regulators require the private platforms use some form of two-factor authentication before agents can log in to consumers’ accounts.

“I can’t see it working at all,” Arenbart said of the network. “A lot of carriers are not even on board.” Rogue agents “will just move to those carriers,” he said.

Kalogeropoulos said that not all the unauthorized enrollments and plan switches are necessarily fraud. Some may be the result of confusion among agents as to whether they represent certain clients, he said — particularly when agents buy contact information from lead-generating firms that may sell the same names to multiple brokerages.

“In the most extreme example, we saw one member submitted 70 times by five different agents,” he said. HealthSherpa’s new system, he said, would determine which agent had the most valid consent.

It’s a multistep process that, in some cases, would be decided by which agent can first get a client to complete a third-party identity-proofing process using a driver’s license or other official documents.

One concern with HealthSherpa’s network, Barlow said, is the possibility that some cases won’t be resolved automatically, and consumers who are switched may have to remain in new plans while conflicts between agents are adjudicated.

Another problem, said Washington, D.C.-based attorney James Napoli, is that the network’s solution to check for consent “is one that occurs after the horse has left the barn.”

Napoli’s clients include Nelson’s group, Health Agents for America. “The fix ought to be much easier on the front end,” he said. “For example, two-factor authentication. There are ways to stop this fraud before it’s already occurred.”

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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During the Republican National Convention’s opening night, Sen. J.D. Vance (R-Ohio) spoke to Fox News for his first interview as former President Donald Trump’s vice presidential nominee.

Sitting in the Fiserv Forum, the convention’s Milwaukee venue, Vance took questions from host Sean Hannity and addressed criticism about his previous comments on domestic violence, abortion, and his 2016 disapproval of Trump.

A couple of times, Vance accused the media of twisting controversial comments about violent marriages and abortion exemptions. We took a closer look at four of his claims.

Vance Mischaracterizes Biden’s Stance on Abortion

Vance addressed his own and Trump’s position on abortion. He described Trump’s position “to let voters in states” decide abortion laws as “reasonable,” contrasting it with Biden’s.

“Donald Trump is running against a Joe Biden president who wants taxpayer-funded abortions up until the moment of birth,” Vance said.

This is False and misleads about how rarely abortions are performed late in pregnancy.

The vast majority of abortions in the U.S. — about 91% — occur in the first trimester. About 1% take place after 21 weeks, and far fewer than 1% occur in the third trimester and typically involve emergencies such as fatal fetal anomalies or life-threatening medical emergencies affecting the pregnant woman.

Biden has said he supported Roe v. Wade, the landmark 1973 U.S. Supreme Court ruling that legalized abortion and was overturned in June 2022, and wants federally protected abortion access.

Roe didn’t provide unrestricted access to abortion. It legalized abortion federally but also enabled the states to restrict or ban abortions once a fetus is viable, typically around 24 weeks into pregnancy. Exceptions to that time frame typically were allowed when the pregnant woman’s life or health was at risk.

The Democratic-led Women’s Health Protection Act of 2021, which failed to pass the Senate, would have effectively codified a right to abortion while allowing for post-viability restrictions similar to Roe‘s.

During the 2020 presidential campaign, Biden promised to repeal the Hyde Amendment, which says federal funds can’t be used to pay for abortions, except in cases of rape or incest or to save the woman’s life. However, the amendment has continued to be included in congressional spending bills.

Vance’s Comments About Women in Violent Marriages

Hannity asked Vance to explain controversial 2021 comments about women staying in violent marriages.

“Both me and my mom actually were victims of domestic violence,” Vance told Hannity. “So, to say ‘Vance has supported women staying in violent marriages,’ I think it’s shameful for them to take a guy with my history and my background and say that that’s what I believe. It’s not what I believe. It’s not what I said.”

The comments in question came from a 2021 event Vance participated in at Pacifica Christian High School in California. In a conversation about his 2016 memoir “Hillbilly Elegy,” the event moderator asked Vance about his experience being raised by his grandparents, following his mother’s divorces and struggles with drug addiction.

“What is causing one generation to give up on fatherhood when the other one was so doggedly determined to stick it out even in tough times?” the moderator asked.

Vance talked about the economic effect of men losing manufacturing jobs then discussed his grandparents’ marriage.

In his memoirs, Vance detailed his grandparents’ relationship and told a story about Vance’s grandmother pouring lighter fluid on his grandfather and striking a match after he came home drunk. She had previously threatened to kill her husband if he came home drunk again, according to a 2016 book review published by The Washington Post.

Vance commended his grandparents for staying together, comparing it with younger generations.

“This is one of the great tricks that I think the sexual revolution pulled on the American populace, which is the idea that, like, ‘Well, OK, these marriages were fundamentally, you know, they were maybe even violent, but certainly they were unhappy. And so getting rid of them and making it easier for people to shift spouses like they change their underwear, that’s going to make people happier in the long term.’

“And maybe it worked out for the moms and dads, though I’m skeptical. But it really didn’t work out for the kids of those marriages.”

In response to a 2022 Vice News story highlighting the comments, Jai Chabria, a strategist for Vance, said the media missed Vance’s point.

“This is a comment that he made where he’s talking about how it’s important that couples stay together for the kids, that we actually have good kids first,” he said. “All he is saying is that it is far too often the case where couples get divorced, they split up, and they don’t take the kids’ needs into consideration.”

Vance’s Comments About Rape, Abortion, and ‘Inconvenience’

Hannity asked Vance to discuss his position on abortion, allowing the senator to address his past comments that have been criticized.

“Let me go back to the issue of abortion,” Hannity said. “And there was this article that said, ‘Oh, J.D. Vance said it’s inconvenient.'”

Vance told Hannity, “The Democrats have completely twisted my words. What I did say is that we sometimes in this society see babies as inconveniences, and I absolutely want us to change that.”

We looked into comments Vance made on abortion while he was running for Senate in 2022. His opponent claimed Vance had said that rape was inconvenient, but we found that’s not directly what Vance said.

In a 2021 interview, Vance was asked whether laws should allow women to get abortions if they were victims of rape or incest. He said society should not view a pregnancy or birth resulting from rape or incest as “inconvenient.”

“My view on this has been very clear, and I think the question betrays a certain presumption that is wrong,” Vance said in 2021. “It’s not whether a woman should be forced to bring a child to term, it’s whether a child should be allowed to live, even though the circumstances of that child’s birth are somehow inconvenient or a problem to the society. The question really, to me, is about the baby.”

Editor’s note: This is excerpted from PolitiFact’s full coverage. You can read the full story here.

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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KFF Health News contributor Andy Miller discussed the Federal Trade Commission criticizing pharmacy benefit managers on KCBS on July 9. He also discussed diversity, equity, and inclusion programs in medicine and bird flu on WUGA’s “The Georgia Health Report” on July 5 and June 28, respectively.

• Click here to hear Miller on KCBS
• Click here to hear Miller on “The Georgia Health Report” on July 5
• Click here to hear Miller on “The Georgia Health Report” on June 28
• Read Lauren Sausser’s “Mississippi Lacks Black Doctors, Even as Lawmakers Increasingly Target Diversity Programs”
• Read Amy Maxmen’s “‘We’re Flying Blind’: CDC Has 1M Bird Flu Tests Ready, but Experts See Repeat of Covid Missteps”

KFF Health News senior correspondent Aneri Pattani discussed the Supreme Court decision to throw out a bankruptcy deal involving the makers of OxyContin, which would have shielded the owners of Purdue Pharma from civil lawsuits, on NPR’s “Weekend Edition Sunday” on June 30. Pattani discussed the same issue in a Facebook Live conversation with Community Education Group on July 3.

• Click here to hear Pattani on “Weekend Edition Sunday”
• Click here to watch Pattani’s discussion with “Community Education Group”
• Read Pattani’s “Supreme Court Upends Purdue Pharma Opioid Settlement”

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

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A lawsuit winding its way through the courts could undermine the power of federal agencies to mandate the services health insurance providers must cover. And that could threaten access to free birth control for millions of Americans.

The case is called Braidwood Management Inc. v. Becerra, and it was brought by plaintiffs looking to strike down Obamacare’s requirements that private insurers cover certain kinds of preventive care without cost sharing. (Think everything from no-cost cancer screenings to free IUDs.)

Studies have shown the requirements to cover preventive care have increased consumers’ use of short- and long-term birth control methods.

Without those nationwide standards, the United States would return to a “wild West” dynamic “in which insurers and employers pick and choose which services they want to cover or which services they want to charge for,” said Zachary Baron, a health policy researcher at Georgetown Law.

The plaintiffs, a group of individuals and Christian-owned businesses, argue the three groups that set coverage standards — including an independent advisory panel to the Health Resources and Services Administration — haven’t been properly appointed by Congress.

In June, the U.S. Court of Appeals for the 5th Circuit issued a self-described “mixed bag” of an opinion. It agreed that one body hadn’t been properly appointed, making its recommendations since the Affordable Care Act became law unconstitutional. But the court said only the plaintiffs get to ignore its standards.

The appeals court sent questions about the other two groups — including the advisory panel to HRSA that makes recommendations on contraception — back to a lower court to consider.

The case is likely headed back to U.S. District Judge Reed O’Connor. O’Connor’s previous ruling that one body hadn’t been properly appointed was supported by the appeals court. His remedy — blocking its mandates nationwide — wasn’t.

O’Connor is notoriously hostile to the ACA — he struck down the law in 2018. The Supreme Court later overturned that ruling.

And that makes reproductive rights advocates nervous.

O’Connor “is someone who is willing to impose remedies where he takes access to care away from everybody in the country,” said Gretchen Borchelt, vice president of reproductive rights and health at the National Women’s Law Center.

A lack of federal requirements for birth control coverage would leave it up to the states to mandate what insurers have to provide. Fourteen states and D.C. currently protect the right to contraception.

But states can go only so far with those rules, because of a federal law that prevents them from regulating employer-funded health plans, which cover about 65 percent of workers.

“If the plaintiffs win here, it would leave significant gaps in coverage that states would be unable to fill,” Baron said.

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

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 hours, John Pernorio repeatedly mashed the call button at his bedside in the Heritage Hills nursing home in Rhode Island. A retired truck driver, he had injured his spine in a fall on the job decades earlier and could no longer walk. The antibiotics he was taking made him need to go to the bathroom frequently. But he could get there only if someone helped him into his wheelchair.

By the time an aide finally responded, he’d been lying in soiled briefs for hours, he said. It happened time and again.

“It was degrading,” said Pernorio, 79. “I spent 21 hours a day in bed.”

Payroll records show that during his stay at Heritage Hills, daily aide staffing levels were 25% below the minimums under state law. The nursing home said it provided high-quality care to all residents. Regardless, it wasn’t in trouble with the state, because Rhode Island does not enforce its staffing rule.

An acute shortage of nurses and aides in the nation’s nearly 15,000 nursing homes is at the root of many of the most disturbing shortfalls in care for the 1.2 million Americans who live in them, including many of the nation’s frailest old people.

They get festering bedsores because they aren’t turned. They lie in feces because no one comes to attend to them. They have devastating falls because no one helps them get around. They are subjected to chemical and physical restraints to sedate and pacify them.

California, Florida, Massachusetts, New York, and Rhode Island have sought to improve nursing home quality by mandating the highest minimum hours of care per resident among states. But an examination of records in those states revealed that putting a law on the books was no guarantee of better staffing. Instead, many nursing homes operated with fewer workers than required, often with the permission of regulators or with no consequences at all.

“Just setting a number doesn’t mean anything if you’re not going to enforce it,” said Mark Miller, former president of the national organization of long-term care ombudsmen, advocates in each state who help residents resolve problems in their nursing homes. “What’s the point?”

Now the Biden administration is trying to guarantee adequate staffing the same way states have, unsuccessfully, for years: with tougher standards. Federal rules issued in April are expected to require 4 out of 5 homes to boost staffing.

The administration’s plan also has some of the same weaknesses that have hampered states. It relies on underfunded health inspectors for enforcement, lacks explicit penalties for violations, and offers broad exemptions for nursing homes in areas with labor shortages. And the administration isn’t providing more money for homes that can’t afford additional employees.

Serious health violations have become more widespread since covid-19 swept through nursing homes, killing more than 170,000 residents and driving employees out the door.

Pay remains so low — nursing assistants earn $19 an hour on average — that homes frequently lose workers to retail stores and fast-food restaurants that pay as well or better and offer jobs that are far less grueling. Average turnover in nursing homes is extraordinarily high: Federal records show half of employees leave their jobs each year.

Even the most passionate nurses and aides are burning out in short-staffed homes because they are stretched too thin to provide the quality care they believe residents deserve. “It was impossible,” said Shirley Lomba, a medication aide from Providence, Rhode Island. She left her job at a nursing home that paid $18.50 an hour for one at an assisted living facility that paid $4 more per hour and involved residents with fewer needs.

The mostly for-profit nursing home industry argues that staffing problems stem from low rates of reimbursement by Medicaid, the program funded by states and the federal government that covers most people in nursing homes. Yet a growing body of research and court evidence shows that owners and investors often extract hefty profits that could be used for care.

Nursing home trade groups have complained about the tougher state standards and have sued to block the new federal standards, which they say are unworkable given how much trouble nursing homes already have filling jobs. “It’s a really tough business right now,” said Mark Parkinson, president and chief executive of one trade group, the American Health Care Association.

And federal enforcement of those rules is still years off. Nursing homes have as long as five years to comply with the new regulations; for some, that means enforcement would fully kick in only at the tail end of a second Biden administration, if the president wins reelection. Former President Donald Trump’s campaign declined to comment on what Trump would do if elected.

Persistent Shortages

Nursing home payroll records submitted to the federal government for the most recent quarter available, October to December 2023, and state regulatory records show that homes in states with tougher standards frequently did not meet them.

In more than two-thirds of nursing homes in New York and more than half of those in Massachusetts, staffing was below the state’s required minimums. Even California, which passed the nation’s first minimum staffing law two decades ago, has not achieved universal compliance with its requirements: at least 3½ hours of care for the average resident each day, including two hours and 24 minutes of care from nursing assistants, who help residents eat and get to the bathroom.

During inspections since 2021, state regulators cited a third of California homes — more than 400 of them — for inadequate staffing. Regulators also granted waivers to 236 homes that said workforce shortages prevented them from recruiting enough nurse aides to meet the state minimum, exempting them from fines as high as $50,000.

In New York, Gov. Kathy Hochul declared an acute labor shortage, which allows homes to petition for reduced or waived fines. The state health department said it had cited more than 400 of the state’s 600-odd homes for understaffing but declined to say how many of them had appealed for leniency.

In Florida, Gov. Ron DeSantis signed legislation in 2022 to loosen the staffing rules for all homes. The law allows homes to count almost any employee who engages with residents, instead of just nurses and aides, toward their overall staffing. Florida also reduced the daily minimum of nurse aide time for each resident by 30 minutes, to two hours.

Now only 1 in 20 Florida nursing homes are staffed below the minimum — but if the former, more rigorous rules were still in place, 4 in 5 homes would not meet them, an analysis of payroll records shows.

“Staffing is the most important part of providing high-quality nursing home care,” said David Stevenson, chair of the health policy department at Vanderbilt University School of Medicine. “It comes down to political will to enforce staffing.”

The Human Toll

There is a yawning gap between law and practice in Rhode Island. In the last three months of 2023, only 12 of 74 homes met the state’s minimum of three hours and 49 minutes of care per resident, including at least two hours and 36 minutes of care from certified nursing assistants, payroll records show. One of the homes below the minimum was Heritage Hills Rehabilitation & Healthcare Center in Smithfield, where Pernorio, president of the Rhode Island Alliance for Retired Americans, went last October after a stint in a hospital.

“From the minute the ambulance took me in there, it was downhill,” he said in an interview.

Sometimes, after waiting an hour, he would telephone the home’s main office for help. A nurse would come, turn off his call light, and walk right back out, and he would push the button again, Pernorio reported in his weekly e-newsletter.

While he praised some workers’ dedication, he said others frequently did not show up for their shifts. He said staff members told him they could earn more flipping hamburgers at McDonald’s than they could cleaning soiled patients in a nursing home.

In a written statement, Heritage Hills did not dispute that its staffing, while higher than that of many homes, was below the minimum under state law.

Heritage Hills said that after Pernorio complained, state inspectors visited the home and did not cite it for violations. “We take every resident concern seriously,” it said in the statement. Pernorio said inspectors never interviewed him after he called in his complaint.

In interviews, residents of other nursing homes in the state and their relatives reported neglect by overwhelmed nurses and aides.

Jason Travers said his 87-year-old father, George, fell on the way to the bathroom because no one answered his call button.

“I think the lunch crew finally came in and saw him on the floor and put him in the bed,” Travers said. His father died in April 2023, four months after he entered the home.

Relatives of Mary DiBiasio, 92, who had a hip fracture, said they once found her sitting on the toilet unattended, hanging on to the grab bar with both hands. “I don’t need to be a medical professional to know you don’t leave somebody hanging off the toilet with a hip fracture,” said her granddaughter Keri Rossi-D’entremont.

When DiBiasio died in January 2022, Rhode Island was preparing to enact a law with nurse and aide staffing requirements higher than anywhere else in the country except Washington, D.C. But Gov. Daniel McKee suspended enforcement, saying the industry was in poor financial shape and nursing homes couldn’t even fill existing jobs. The governor’s executive order noted that several homes had closed because of problems finding workers.

Yet Rhode Island inspectors continue to find serious problems with care. Since January 2023, regulators have found deficiencies of the highest severity, known as immediate jeopardy, at 23 of the state’s 74 nursing homes.

Homes have been cited for failing to get a dialysis patient to treatment and for giving one resident a roommate’s methadone, causing an overdose. They have also been cited for violent behavior by unsupervised residents, including one who shoved pillow stuffing into a resident’s mouth and another who turned a roommate’s oxygen off because it was too noisy. Both the resident who was attacked and the one who lost oxygen died.

Bottom Lines

Even some of the nonprofit nursing homes, which don’t have to pay investors, are having trouble meeting the state minimums — or simply staying open.

Rick Gamache, chief executive of the nonprofit Aldersbridge Communities, which owns Linn Health & Rehabilitation in East Providence, said Rhode Island’s Medicaid program paid too little for the home to keep operating — about $292 per bed, when the daily cost was $411. Aldersbridge closed Linn this summer and converted it into an assisted living facility.

“We’re seeing the collapse of post-acute care in America,” Gamache said.

Many nursing homes are owned by for-profit chains, and some researchers, lawyers, and state authorities argue that they could reinvest more of the money they make into their facilities.

Bannister Center, a Providence nursing home that payroll records show is staffed 10% below the state minimum, is part of Centers Health Care, a New York-based private chain that owns or operates 31 skilled nursing homes, according to Medicare records. Bannister lost $430,524 in 2021, according to a financial statement it filed with Rhode Island regulators.

Last year, the New York attorney general sued the chain’s owners and investors and their relatives, accusing them of improperly siphoning $83 million in Medicaid funds out of their New York nursing homes by paying salaries for “no-show” jobs, profits above what state law allowed, and inflated rents and fees to other companies they owned. For instance, one of those companies, which purported to provide staff to the homes, paid $5 million to the wife of Kenny Rozenberg, the chain’s chief executive, from 2019 to 2021, the lawsuit said.

The defendants argued in court papers that the payments to investors and owners were legal and that the state could not prove they were Medicaid funds. They have asked for much of the lawsuit to be dismissed.

Jeff Jacomowitz, a Centers Health Care spokesperson, declined to answer questions about Bannister, Centers’ operations, or the chain’s owners.

Miller, the District of Columbia’s long-term care ombudsman, said many nursing home owners could pay better wages if they didn’t demand such high profits. In D.C., 7 in 10 nursing homes meet minimum standards, payroll records show.

“There’s no staffing shortage — there’s a shortage of good-paying jobs,” he said. “I’ve been doing this since 1984 and they’ve been going broke all the time. If it really is that bad of an investment, there wouldn’t be any nursing homes left.”

The new federal rules call for a minimum of three hours and 29 minutes of care each day per resident, including two hours and 27 minutes from nurse aides and 33 minutes from registered nurses, and an RN on-site at all times.

Homes in areas with worker shortages can apply to be exempted from the rules. Dora Hughes, acting chief medical officer for the U.S. Centers for Medicare & Medicaid Services, said in a statement that those waivers would be “time-limited” and that having a clear national staffing minimum “will facilitate strengthened oversight and enforcement.”

David Grabowski, a health policy professor at Harvard Medical School, said federal health authorities have a “terrible” track record of policing nursing homes. “If they don’t enforce this,” he said, “I don’t imagine it’s going to really move the needle a lot.”

Methodology for Analysis of Nursing Home StaffingThe KFF Health News data analysis focused on five states with the most rigorous staffing requirements: California, Florida, Massachusetts, New York, and Rhode Island.

To determine staffing levels, the analysis used the daily payroll journals that each nursing home is required to submit to the federal government. These publicly available records include the number of hours each category of nursing home employee, including registered nurses and certified nursing assistants, worked each day and the number of residents in each home. We used the most recent data, which included a combined 1.3 million records covering the final three months of 2023.

We calculated staffing levels by following each state’s rules, which specify which occupations are counted and what minimums homes must meet. The analysis differed for each state. Massachusetts, for instance, has a separate requirement for the minimum number of hours of care registered nurses must provide each day.

In California, we used state enforcement action records to identify homes that had been fined for not meeting its law. We also tallied how many California homes had been granted waivers from the law because they couldn’t find enough workers to hire.

For each state and Washington, D.C., we calculated what proportion of homes complied with state or district law. We shared our conclusions with each state’s nursing home regulatory agency and gave them an opportunity to respond.

This analysis was performed by senior correspondent Jordan Rau and data editor Holly K. Hacker.

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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Few people want to go into a nursing home, but doing so can be the right choice if you or a loved one is physically or cognitively disabled or recovering from surgery. Unfortunately, homes vary greatly in quality, and many don’t have enough nurses and aides to give residents the care they need.

Q: How do I find nursing homes worth considering?

Start with Medicare’s online comparison tool, which you can search by city, state, ZIP code, or home name. Ask for advice from people designated by your state to help people who are older or have disabilities search for a nursing home. Every state has a “no wrong door” contact for such inquiries.

You can also reach out to your local area agency on aging, a public or nonprofit resource, and your local long-term care ombudsman, who helps residents resolve problems with their nursing home.

Find your area agency on aging and ombudsman through the federal government’s Eldercare Locator website or by calling 1-800-677-1116. Identify your ombudsman through the National Consumer Voice for Quality Long-Term Care, an advocacy group. Some people use private placement agencies, but they may refer you only to homes that pay them a referral fee.

Q: What should I find out before visiting a home?

Search online for news coverage and for reviews posted by residents or their families.

Call the home to make sure beds are available. Well-regarded homes can have long waiting lists.

Figure out how you will pay for your stay. Most nursing home residents rely primarily on private long-term care insurance, Medicare (for rehabilitation stays) or Medicaid (for long-term stays if you have few assets). In some cases, the resident pays entirely out-of-pocket. If you’re likely to run out of money or insurance coverage during your stay, make sure the home accepts Medicaid. Some won’t admit Medicaid enrollees unless they start out paying for the care themselves.

If the person needing care has dementia, make sure the home has a locked memory-care unit to ensure residents don’t wander off.

Q: How can I tell if a home has adequate staffing?

Medicare’s comparison tool gives each home a rating of one to five stars based on staffing, health inspection results, and measurements of resident care such as how many residents had pressure sores that worsened during their stay. Five is the highest rating. Below that overall rating is one specifically for staffing.

Be sure to study the annual staff turnover rate, at the bottom of the staffing page. Anything higher than the national rate — an appalling 52% — should give you pause.

You should also pay attention to the inspection star rating. The “quality” star rating is less reliable because homes self-report many of the results and have incentives to put a glossy spin on their performance.

Q: Does a home with three, four, or five stars provide good care?

Not necessarily. Medicare’s ratings compare the staffing of a home against that of other homes, not against an independent standard. The industry isn’t as well staffed as many experts think it needs to be: About 80% of homes, even some with four and five stars, are staffed below the standards the Biden administration will be requiring homes to meet in the next five years.

Q: How many workers are enough?

There’s no straightforward answer; it depends on how frail and sick a nursing home’s residents are. Medicare requires homes to prominently post their staffing each day. The notices should show the number of residents, registered nurses, licensed vocational nurses, and nurse aides. RNs are the most skilled and manage the care. LVNs provide care for wounds and catheters and handle basic medical tasks. Nurse aides help residents eat, dress, and get to the bathroom.

Expert opinions vary on the ideal ratios of staffing. Sherry Perry, a Tennessee nursing assistant who is the chair of her profession’s national association, said that preferably a nursing assistant should care for eight or fewer residents.

Charlene Harrington, an emerita professor of nursing at the University of California-San Francisco, recommends that on the day shift there be one nurse aide for every seven residents who need help with physical functioning or have behavioral issues; one RN for every 28 residents; and one LVN for every 38 residents. Patients with complex medical needs will need higher staffing levels.

Staffing can be lower at night because most residents are sleeping, Harrington said.

Nursing home industry officials say that there’s no one-size-fits-all ratio and that a study the federal government published last year found quality improved with higher staffing but didn’t recommend a particular level.

Q: What should I look for when I visit a home?

Watch to see if residents are engaged in activities or if they are alone in their rooms or slumped over in wheelchairs in hallways. Are they still in sleeping gowns during the day? Do nurses and aides know the residents by name? Is food available only at mealtimes, or can residents get snacks when hungry? Watch a meal to see whether people are getting the help they need. You might visit at night or on weekends or holidays, when staffing is thinnest.

Q: What should I ask residents and families in the home?

Are residents cared for by the same people or by a rotating cast of strangers? How long do they have to wait for help bathing or getting out of bed? Do they get their medications, physical therapy, and meals on time? Do aides come quickly if they turn on their call light? Delays are strong signs of understaffing.

Medicare requires homes to allow residents and families to form councils to address common issues. If there’s a council, ask to speak to its president or an officer.

Ask what proportion of nurses and aides is on staff or from temporary staffing agencies; temp workers won’t know the residents’ needs and likes as well. A home that relies heavily on temporary staff most likely has trouble recruiting and keeping employees.

Q: What do I need to know about a home’s leadership?

Turnover at the top is a sign of trouble. Ask how long the home’s administrator has been on the job; ideally it should be at least a year. (You can look up administrator turnover on the Medicare comparison tool: It’s on the staffing page beneath staff turnover. But be aware the information may not be up to date.) You should also ask about the tenure of the director of nursing, the top clinical supervisor in a home.

During your tour, observe how admissions staff members treat the person who would be living there. “If you walk in to visit with your mom and they greeted you and didn’t greet your mom or focused all their attention on you, go somewhere else,” advised Carol Silver Elliott, president of the Jewish Home Family, a nonprofit in Rockleigh, New Jersey.

Q: Does it matter who owns the home?

It often does. Generally, nonprofit nursing homes provide better care because they can reinvest revenue back into the home rather than paying some of it to owners and investors.

But there are some very good for-profit homes and some lousy nonprofits. Since most homes in this country are for-profit, you may not have a choice in your area. As a rule of thumb, the more local and present the owner, the more likely the home will be well run. Many owners live out of state and hide behind corporate shell companies to insulate themselves from accountability. If nursing home representatives can’t give you a clear answer when you ask who owns it, think twice.

Finally, ask if the home’s ownership has changed in the past year or so or if a sale is pending. Stable, well-run nursing homes aren’t usually the ones owners are trying to get rid of.

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 — Sonja Verdugo lost her husband to an opioid overdose last year. She regularly delivers medical supplies to people using drugs who are living — and dying — on the streets of Los Angeles. And she advocates at Los Angeles City Hall for policies to address addiction and homelessness.

Yet Verdugo didn’t know that hundreds of millions of dollars annually are flowing to California communities to combat the opioid crisis, a payout that began in 2022 and continues through 2038.

The money comes from pharmaceutical companies that made, distributed, or sold prescription opioid painkillers and that agreed to pay about $50 billion nationwide to settle lawsuits over their role in the overdose epidemic. Even though a recent Supreme Court decision upended a settlement with OxyContin maker Purdue Pharma, many other companies have already begun paying out and will continue doing so for years.

California, the most populous state, is in line for more than $4 billion.

“You can walk down the street and you see someone addicted on every corner — I mean it’s just everywhere,” Verdugo said. “And I’ve never even heard of the funds. And to me, that’s crazy.”

Across the nation, much of this windfall has been shrouded in secrecy, with many jurisdictions offering little transparency on how they’re spending the money, despite repeated queries from people in recovery and families who lost loved ones to addiction.

Meanwhile, there’s plenty of jockeying over how the money should be used. Companies are lobbying for spending on products that range from medication bottles that lock to full-body scanners to screen people entering jails. Local officials are often advocating for the fields they represent, whether it’s treatment, prevention, or harm reduction. And some governments are using it to plug budget gaps.

In California, local governments must report how they spend settlement funds to the state’s Department of Health Care Services, but there’s no requirement that the reports be made public.

KFF Health News obtained copies of the documents via a public records request and is now making available for the first time 265 spending reports from local governments for fiscal year 2022-23, the most recent reports filed.

The reports provide a snapshot of the early spending priorities, and tensions.

Naloxone an Early Winner

As of June 2023, the bulk of opioid settlement funds controlled by California cities and counties — more than $200 million — had yet to be spent, the reports show. It’s a theme echoed nationwide as officials take time to deliberate.

The city and county of Los Angeles accounted for nearly one-fifth of that unspent total, nearly $39 million, though officials say that since the report was filed they’ve begun allocating the money to recovery housing and programs to connect people who are homeless with residential addiction treatment.

Among local governments that did use the cash in the first fiscal year, the most popular object of spending was naloxone, a medication that reverses opioid overdoses and is often known by the brand name Narcan. The medication accounted for more than $2 million in spending across 19 projects.

One of those projects was in Union City, in the San Francisco Bay Area. The community of about 72,000 residents had five suspected fentanyl overdoses, two of them fatal, within 24 hours in September.

The opioid settlement money “was invaluable,” Corina Hahn, the city’s director of community and recreation services, said in her report. “Having these resources available helped educate, train and distribute the Narcan kits to parents, youth and school staff.”

Union City bought 500 kits, each containing two doses of naloxone. The kits cost about $13,500, with an additional $56,000 set aside for similar projects, including backpacks containing Narcan kits and training materials for high school students.

Union City also plans to expand its outreach to homeless people to fund drug education and recovery services, including addiction counseling.

Those are the sorts of lifesaving services that Verdugo, the Los Angeles advocate, said are desperately needed as deaths of people living on the streets pile up.

She lost her 46-year-old husband, Jesse Baumgartner, in June of last year to an addiction that started after he was prescribed pain medications for a high school wrestling injury. He tried kicking his habit for six years using methadone, but each time prescribers lowered his dosage the cravings drove him back to illicit drugs.

“It was just this horrible roller coaster of him not being able to get off of it,” Verdugo said.

By then the couple had survived 4½ years of being homeless and had been in stable housing for about two years.

Fentanyl use, particularly among homeless people, “is just rampant,” she said. People sometimes are initially exposed to the cheap, highly addictive substance unknowingly when it is mixed with something else.

“Once they start using it, it's like they just can't backtrack,” said Verdugo, who works as a community organizer for Ground Game LA.

So she leaves boxes of naloxone at homeless encampments in the hope of saving lives.

“They definitely use it, because it's needed right then — they can't wait for an ambulance to come out,” she said.

Cities Backtrack on Spending for Law Enforcement

By contrast, the cities of Irvine and Riverside, both in Greater Los Angeles, listed plans to prioritize law enforcement by buying portable drug analyzers, though neither city did so in the first fiscal year, 2022-23. Their inclination mirrored patterns elsewhere in the country, with millions in settlement funds flowing to police departments and jails.

But such uses of the money have stirred controversy, and both cities backed away from the drug analyzer purchase after the Department of Health Care Services issued rules that opioid settlement funds may not be used for certain law enforcement efforts. The rules specifically excluded “equipment for the purpose of evidence gathering for prosecution, such as the TruNarc Handheld Narcotics Analyzer.”

In Hawthorne, also near Los Angeles, the police department had already spent about $25,000 of settlement funds on an initial installment to buy 80 BolaWraps, devices that shoot Kevlar tethers to wrap around a person’s limbs or torso.

After the state said BolaWraps were not an allowable expense, the city said it would find other funding sources to pay the remaining installments.

Santa Rosa, in California’s wine country, spent nearly $30,000 on police officer wellness and support.

The funds allowed the police department to boost its contracted wellness coordinator from a part-time to a full-time position, and to buy a mobile machine to measure electrical activity in the brain, said Sgt. Patricia Seffens, a spokesperson.

The goal is to use the technology on police officers to help “assess the traumatic impact of responding to the increasing overdose calls,” Seffens said in an email.

In Dublin, east of San Francisco, officials are using part of their $62,000 in settlement cash for a D.A.R.E. program.

D.A.R.E., which stands for Drug Abuse Resistance Education, is a series of classes taught by police officers in schools to encourage students to resist peer pressure and avoid drugs. It was initially developed during the “Just Say No” campaign in the 1980s.

Studies have found inconsistent results from the program and no long-term effects on drug use, leading many researchers to dismiss it as “ineffective.”

But on its website, D.A.R.E. cites studies since the program was updated in 2009, which found “a positive effect” on fifth graders and “statistically significant reductions” in drinking and smoking about four months after completing the program.

“The D.A.R.E. program when it first came out looks a lot, lot different than what it looks like right now,” said Nate Schmidt, the Dublin police chief.

Schmidt said additional settlement money will be used to distribute naloxone to residents and stock it at schools and city facilities.

Other local governments in California spent modest sums on a wide range of addiction-related measures. Ukiah, in Mendocino County, north of San Francisco, spent $11,000 for a new heating and air conditioning system for a local drug treatment center. Orange and San Mateo counties spent settlement funds in part on medication-assisted treatment for people incarcerated in their jails. The city of Oceanside spent $16,000 to showcase drug prevention art and videos made by middle school students in local movie theaters, in public spaces, and on buses and taxis.

The Department of Health Care Services said it plans to release a statewide report on how the funds were spent, as well as the individual city and county reports, by year’s end.

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism.

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 HostJulie RovnerKFF 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.Republicans released a draft party platform in advance of the GOP national convention next week, and while it is being described as softening the party’s stance opposing abortion, support from major groups that oppose abortion suggests that claim may be something of a mirage.

Meanwhile, the Federal Trade Commission is taking on the pharmacy benefits management industry as it prepares to file suit charging that the largest PBMs engage in anticompetitive behavior that raises patients’ drug costs.

This week’s panelists are Julie Rovner of KFF Health News, Jessie Hellmann of CQ Roll Call, Shefali Luthra of The 19th News, and Sandhya Raman of CQ Roll Call.

PanelistsJessie HellmannCQ Roll Call@jessiehellmann Read Jessie's stories.Shefali LuthraThe 19th@shefalil Read Shefali's stories.Sandhya RamanCQ Roll Call@SandhyaWrites Read Sandhya's stories.Among the takeaways from this week’s episode:

• For the first time in decades, the GOP presidential platform will not include a call for a national abortion ban. But Republicans are hardly soft-pedaling the issue: The new platform effectively asserts that abortion violates the 14th Amendment, which guarantees equal protection under the law for all citizens — including, under their reading, human embryos. Under that argument, abortion opponents may already have the constitutional justification they need to defend in court further restrictions on the procedure.
• Lawmakers in Washington are making early progress on government spending bills, including for the Department of Health and Human Services. Some political issues, like access to gender-affirming care for service members and minors, are creating wrinkles. Congress will likely need to pass a stopgap spending measure to avoid a government shutdown this fall.
• And a new report from the Federal Trade Commission illuminates the sweeping control of a handful of pharmacy benefits managers over most of the nation’s prescription drugs. As the government eyes lawsuits against some of the major PBMs alleging anticompetitive behavior, the findings bolster the case that PBMs are inflating drug prices.

Also this week, Rovner interviews Jennifer Klein, director of the White House Gender Policy Council, about the Biden administration’s policies to ensure access to reproductive health care.

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

Julie Rovner: STAT News’ “Troubled For-Profit Chains Are Stealthily Operating Dozens of Psychiatric Hospitals Under Nonprofits’ Names,” by Tara Bannow.

Jessie Hellmann: North Carolina Health News’ “N.C. House Wants to Spend Opioid Money on Multiple Abstinence-Based Recovery Centers, While Experts Stress Access to Medication,” by Grace Vitaglione.

Shefali Luthra: The Washington Post’s “These GOP Women Begged the Party to Abandon Abortion. Then Came Backlash,” by Caroline Kitchener.

Sandhya Raman: Roll Call’s “For at Least One Abortion Clinic, Dobbs Eased Stressors,” by Sandhya Raman.

CreditsFrancis YingAudio producerEmmarie Huetteman Editor To hear all our podcasts, click here.

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

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

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Medical debt is a growing burden for millions of people around the country, from parents in Illinois to immigrants in Colorado to residents of the “Diabetes Belt” across the South, and it’s now being recognized as a health-care problem. People often forgo care or prescriptions if they have debt, according to a KFF Health News investigation, and the psychological toll can be steep, too.

The Biden administration proposed barring medical debt from credit reports. This morning, Senate Health Committee Chair Bernie Sanders (I-Vt.) will convene a hearing in D.C. on medical debt.

Now local governments are looking at how they can assist residents by buying up medical debt on the cheap and retiring it.

Under a measure the Los Angeles County Board of Supervisors approved unanimously last month, the county will enter into a pilot program with Undue Medical Debt (previously known as RIP Medical Debt), a national organization that turns the debt collection process on its head. Instead of buying outstanding debt from hospitals and pursuing patients for payment, as commercial debt collectors do, Undue Medical Debt looks to buy debt, usually for pennies on the dollar, then retire it.

Los Angeles County’s $5 million investment is expected to allow Undue Medical Debt to help 150,000 low-income residents and eliminate $500 million in debt. It’s one component of the county’s larger medical debt plan, which includes tracking hospitals’ role in feeding the $2.9 billion problem, boosting bill retirement for low-income patients and monitoring debt collection practices.

Four in 10 adults in the United States struggle with health-care debt, and Los Angeles County has labeled it a public health issue on par with diabetes and asthma.

The logic behind the effort is simple. “Getting health care should never make anyone sicker,” said Naman Shah, medical and dental affairs director at the county public health department.

Undue Medical Debt has contracted with more than a dozen city, county and state governments across the country to provide local debt relief, including Cook County, Ill. (home to Chicago); Toledo; Arizona and New Jersey.

Since its inception, Undue Medical Debt has relieved almost $12 billion in medical debt across the country.

Beginning in 2022, Cook County has leveraged American Rescue Plan dollars — federal emergency funds made available during the coronavirus pandemic — to wipe out over $382 million in medical debt for more than 213,000 residents. About 15 other state or local governments have also used American Rescue Plan funds to retire medical debt, according to Undue Medical Debt, and other jurisdictions are developing similar plans.

Mona Shah of Community Catalyst, a national health equity and policy organization, applauds the local government moves but cautions that one-time debt relief goes only so far. She endorsed Los Angeles County’s approach: pairing debt relief with a longer-term effort to understand and address the root causes of medical debt, in part by getting a better handle on debt collection practices and helping hospitals improve their financial assistance programs.

“We don’t want to ever deny that relief, but we really need to focus on preventing medical debt from happening in the first place,” Shah said.

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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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Over three decades of relentless pain, Jonna Tallant has tried about every TMJ treatment: mouthguards, six sets of braces, dental crowns and appliances, drugs, physical therapy, Botox, massage, acupuncture, chiropractic care, and surgery.

Nothing has helped. Tallant, 51, of Knoxville, Tennessee, said she lives in agony and cannot eat any food that must be chewed. Despite spending a small fortune on treatment, she can barely open her mouth enough to squeeze in a toothbrush.

Tallant estimates she has paid at least $200,000 for TMJ care. She provided medical records showing more than $60,000 in out-of-pocket spending in just the past decade. She has exhausted her savings and borrowed money, she said, and her family sold a plot of land to help pay the bills.

Tallant will need another jaw surgery later this year, which could cost as much as $75,000. Her insurance is unlikely to pay for any of it, she said.

“It’s a bottomless pit,” Tallant said, choking up, as she leafed through a pile of medical records splayed on her dining table. “It has consumed so much of my life that there is not much left.”

Temporomandibular joint disorders, known as TMJ or TMD, cause pain and stiffness in the face and jaw and are believed to afflict as many as 33 million Americans. Scientific studies have found that women experience TMJ disorders two to nine times as often as men, and while minor symptoms may not require treatment, severe symptoms can include disabling pain that makes it challenging to eat, work, talk, or sleep.

Despite the commonness of TMJ disorders, treatments are often not covered by medical or dental insurance, leaving patients with out-of-pocket bills that can range from a few hundred dollars to tens of thousands of dollars. Many medical insurers consider TMJ treatment too dental-focused for medical insurance, while dental insurers consider it too medical for dental insurance, leaving patients stuck in a “medical-dental divide” that hinders care and increases cost, according to the National Academies of Science, Engineering, and Medicine.

Worse still, researchers warn that the meager insurance coverage available for TMJ often excludes the safest forms of care while steering patients toward surgery — a riskier and irreversible option that the National Institutes of Health recommends “staying away” from.

Terrie Cowley, a longtime TMJ patient who leads the TMJ Association, an advocacy group, has spoken with patients who refinanced their homes and cashed out retirement accounts to afford the out-of-pocket costs for their care.

“It bankrupts them,” Cowley said. “But it isn’t nearly as horrible as when the treatments go wrong.”

Insurance woes are just one facet of the problems with TMJ care in the United States. In April, a joint investigation by KFF Health News and CBS News found that TMJ disorders have been widely misunderstood by many dentists for decades, so some patients fall into a spiral of ineffective care and futile surgeries that do more harm than good. Dentistry has tried to correct course in recent years with the promising new specialty of orofacial pain, which treats TMJ disorders with a more conservative approach, but these specialists are few and rarely covered by insurance, so their services remain beyond the reach of many patients.

Tony Schwartz, president of the American Board of Orofacial Pain, said the specialty is still fighting for widespread acceptance from insurance companies and some dentists, who cling to “old, debunked theories” that TMJ disorders are caused by misaligned teeth or a bad bite.

“This is the basis for why insurance companies have been so reluctant to, over the years, pay for any treatment,” Schwartz said. “Because there has been so much controversy about what works and what doesn’t work.”

For this article, KFF Health News and CBS News interviewed 10 patients with severe TMJ disorders who have been in treatment for years, if not decades. Almost all the patients described spending thousands of dollars out-of-pocket at every stage of their care, usually because treatment fell outside their medical and dental insurance coverage. Some patients said their medical bills mounted just as debilitating pain forced them to leave jobs or abandon careers. Some underwent expensive TMJ surgeries offered by only a small group of surgeons who generally do not accept insurance.

Kyra Wiedenkeller, 45, of New York state, said she worked as a manager in the music industry, including on “American Idol,” before her “unrelenting pain” became too great.

Wiedenkeller, who is now on disability, said she’s spent at least $100,000 out-of-pocket on TMJ treatment and provided medical documents showing she had been billed for at least that much.

“Every doctor I’ve seen has made me progressively worse,” Wiedenkeller said. “I paid an exorbitant amount of money. I wiped out my 401(k) for these treatments in hopes of getting better time and time again. And just get worse and worse. I feel like there is no end.”

Wiedenkeller’s story echoes findings of the national academies, which conducted a comprehensive study of TMJ in 2020 that included input from more than 110 patients. The study found that TMJ patients are “often harmed” during “overly aggressive” treatment, which frequently falls into a chasm between medical and dental insurance, leaving most bills paid out-of-pocket at costs of up to tens of thousands of dollars.

As an example, the study describes how dental splints — a common TMJ treatment — have been considered to be medical care by some dental insurers and considered dental care by some medical insurance programs, and are “therefore not covered” by either.

And when TMJ is covered by insurance, it tends to exclude “low-risk, effective treatments,” like those used by orofacial pain specialists, but covers “higher-risk” options, like jaw surgery, according to the national academies study. This leads to patients receiving “the care that is best reimbursed, rather than the care that is best,” the study said.

Other researchers have come to the same conclusion.

James Fricton, an orofacial pain specialist who studies the lack of insurance coverage for TMJ care, said that even though surgery is appropriate for few patients, it is the only treatment covered by most insurance plans in most states.

“Patients will assume that insurance companies know what they’re doing,” Fricton said. “If that’s all that’s covered, what do you think they are going to get? Surgery.”

In contrast, insurance coverage appears to be weakest at the other end of the treatment spectrum.

“Orofacial pain,” officially recognized by the American Dental Association in 2020, is now taught in residency programs at a dozen U.S. colleges at least, including the universities of Michigan, Minnesota, and North Carolina. The specialty avoids making irreversible changes to the bite or jaw and instead treats TMJ disorders with tools like counseling, dietary changes, medication, physical therapy, and removable dental splints. Many TMJ patients can be treated by orofacial pain specialists for a few thousand dollars.

The national academies study describes this approach as one of the few promising options for TMJ patients, citing studies that showed improvement among patients who are taught how to manage their pain. But the national academies also said it is a “particular challenge” that this treatment is “often not considered reimbursable by insurance.”

In separate interviews, six orofacial pain specialists with clinics around the country said insurance coverage for this specialty care is patchy, poor, or nonexistent. Several said their specialty is often absent from dropdown menus on standard insurance forms. Most said the insurance industry had fallen behind on the evolving science of TMJ, missing a chance to help patients and cut costs.

“It’s a no-brainer,” said Jeffrey Okeson, dean of the University of Kentucky’s College of Dentistry. “If I was an insurance person, I’d want to supply $1,000 to a patient to do conservative treatment … instead of $15,000 or $30,000 for surgery. Think of the money that can be saved there.”

Okeson and the other orofacial pain specialists said unreliable insurance coverage has hamstrung the specialty by making it less attractive to the next generation of dentists.

Currently there are fewer than 300 certified orofacial pain specialists in the United States, according to a database maintained by the American Board of Orofacial Pain. At least 20 states have no certified specialists, and eight other states have only one or two.

Deepika Jaiswal, the only certified specialist in Iowa, said some patients with TMJ disorders drive across the state to see her.

However, most of her patients — and many of her fellow dentists — remain unaware of the orofacial pain specialty, Jaiswal said, so insurance companies likely feel little pressure to include it in their coverage.

“People don’t even know around the area that we exist,” Jaiswal said. “When there are more providers providing this service, I think at that point there will be more insurance.”

CBS News producer Nicole Keller contributed to this article.

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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As bird flu spreads among dairy cattle in the U.S., veterinarians and researchers have taken note of Finland’s move to vaccinate farmworkers at risk of infection. They wonder why their government doesn’t do the same.

“Farmworkers, veterinarians, and producers are handling large volumes of milk that can contain high levels of bird flu virus,” said Kay Russo, a livestock and poultry veterinarian in Fort Collins, Colorado. “If a vaccine seems to provide some immunity, I think it should be offered to them.”

Among a dozen virology and outbreak experts interviewed by KFF Health News, most agree with Russo. They said people who work with dairy cows should be offered vaccination for a disease that has killed roughly half of the people known to have gotten it globally over the past two decades, has killed cats in the U.S. this year, and has pandemic potential.

However, some researchers sided with the Centers for Disease Control and Prevention in recommending against vaccination for now. There’s no evidence that this year’s bird flu virus spreads between people or causes serious disease in humans. And it’s unclear how well the available vaccine would prevent either scenario.

But the wait-and-see approach “is a gamble,” said Jennifer Nuzzo, director of the Pandemic Center at Brown University. “By the time we see severe outcomes, it means a lot of people have been infected.”

“Now is the time to offer the vaccines to farmworkers in the United States,” said Nahid Bhadelia, director of the Boston University Center on Emerging Infectious Diseases. Even more urgent measures are lagging in the U.S., she added. Testing of farmworkers and cows is sorely needed to detect the H5N1 bird flu virus, study it, and extinguish it before it becomes a fixture on farms — posing an ever-present pandemic threat.

Demetre Daskalakis, director of the CDC’s National Center for Immunization and Respiratory Diseases, said the agency takes bird flu seriously, and the U.S. is stockpiling 4.8 million doses of the vaccine. But, he said, “there’s no recommendation to launch a vaccine campaign.”

“It’s all about risk-benefit ratios,” Daskalakis said. The benefits are blurry because there hasn’t been enough testing to understand how easily the virus jumps from cows into people, and how sick they become. Just four people in the United States have tested positive this year, with mild cases — too few to draw conclusions.

Other farmworkers and veterinarians working on dairy farms with outbreaks have reported being sick, Russo said, but they haven’t been tested. Public health labs have tested only about 50 people for the bird flu since the outbreak was detected in March.

Still, Daskalakis said the CDC is not concerned that the agency is missing worrisome bird flu infections because of its influenza surveillance system. Hospitals report patients with severe cases of flu, and numbers are normal this year.

Another signal that puts the agency at ease is that the virus doesn’t yet have mutations that allow it to spread rapidly between people as they sneeze and breathe. “If we start to see changes in the virus, that’s another factor that would be part of the decision to move from a planning phase into an operational one,” Daskalakis said.

On July 8, researchers reported that the virus may be closer to spreading between people than previously thought. It still doesn’t appear to do so, but experiments suggest it has the ability to infect human airways. It also spread between two laboratory ferrets through the air.

In considering vaccines, the agency takes a cue from a 1976 outbreak of the swine flu. Officials initially feared a repeat of the 1918 swine flu pandemic that killed roughly half a million people in the United States. So they rapidly vaccinated nearly 43 million people in the country within a year.

But swine flu cases turned out to be mild that year. This made the vaccine seem unnecessarily risky as several reports of a potentially deadly disorder, Guillain-Barré Syndrome, emerged. Roughly one of every million people who get influenza vaccines may acquire the disorder, according to the CDC. That risk is outweighed by the benefits of prevention. Since Oct. 1, as many as 830,000 people have been hospitalized for the seasonal flu and 25,000 to 75,000 people have died.

An after-action report on the 1976 swine flu situation called it a “sobering, cautionary tale” about responding prematurely to an uncertain public health threat. “It’s a story about what happens when you launch a vaccine program where you are accepting risk without any benefit,” Daskalakis said.

Paul Offit, a virologist at the Children’s Hospital of Philadelphia, sides with the CDC. “I’d wait for more data,” he said.

However, other researchers say this isn’t comparable to 1976 because they aren’t suggesting that the U.S. vaccinate tens of millions of people. Rather they’re talking about a voluntary vaccine for thousands of people in close contact with livestock. This lessens the chance of rare adverse effects.

The bird flu vaccine on hand, made by the flu vaccine company CSL Seqirus, was authorized last year by the European equivalent of the FDA. An older variety has FDA approval, but the newer variety hasn’t gotten the green light yet.

Although the vaccine targets a different bird flu strain than the H5N1 virus now circulating in cows, studies show it triggers an immune response against both varieties. It’s considered safe because it uses the same egg-based vaccine technology deployed every year in seasonal flu vaccines.

For these reasons, the United States, the United Kingdom, the Netherlands, and about a dozen other countries are stockpiling millions of doses. Finland expects to offer them to people who work on fur farms this month as a precaution because its mink and fox farms were hit by the bird flu last year.

In contrast, mRNA vaccines being developed against the bird flu would be a first for influenza. On July 2, the U.S. government announced that it would pay Moderna $176 million for their development, and that the vaccines may enter clinical trials next year. Used widely against covid-19, this newer technology uses mRNA to teach the immune system how to recognize particular viruses.

In the meantime, Florian Krammer, a flu virologist at Mount Sinai’s Icahn School of Medicine, said people who work on dairy farms should have the option to get the egg-based vaccine. It elicits an immune response against a primary component of the H5N1 bird flu virus that should confer a degree of protection against infection and serious sickness, he said.

Still, its protection wouldn’t be 100%. And no one knows how many cases and hospitalizations it would prevent since it hasn’t been used to combat this year’s virus. Such data should be collected in studies that track the outcomes of people who opt to get one, he said.

Krammer isn’t assuaged by the lack of severe bird flu cases spotted in clinics. “If you see a signal in hospitals, the cat is out of the bag. Game over, we have a pandemic,” he said. “That’s what we want to avoid.”

He and others stressed that the United States should be doing everything it can to curb infections before flu season starts in October. The vaccine could provide an additional layer of protection on top of testing, wearing gloves, and goggles, and disinfecting milking equipment. Scientists worry that if people get the bird flu and the seasonal flu simultaneously, bird flu viruses could snag adaptations from seasonal viruses that allow them to spread swiftly among humans.

They also note it could take months to distribute the vaccines after they’re recommended since it requires outreach. People who work beside dairy cows still lack information on the virus, four months into this outbreak, said Bethany Boggess Alcauter, director of research at the National Center for Farmworker Health.

Health officials have talked with dairy farm owners, but Boggess’ interviews with farmworkers suggest those conversations haven’t trickled down to their staff. One farmworker in the Texas Panhandle told her he was directed to disinfect his hands and boots to protect cows from diseases that workers may carry. “They never told us if the cow could infect us with some illness,” the farmworker said in Spanish.

The slow pace of educational outreach is a reminder that everything takes time, including vaccine decisions. When deciding whether to recommend vaccines, the CDC typically seeks guidance from its Advisory Committee on Immunization Practices, or the ACIP. A consultant to the group, infectious disease researcher William Schaffner, has repeatedly asked the agency to present its thinking on Seqirus’ bird flu vaccine.

Rather than fret about the 1976 swine flu situation, Schaffner suggested the CDC consider the 2009-10 swine flu pandemic. It caused more than 274,000 hospitalizations and 12,000 deaths in the U.S. within a year. By the time vaccines were rolled out, he said, much of the damage had been done.

“The time to discuss this with ACIP is now,” said Schaffner, before the bird flu becomes a public health emergency. “We don’t want to discuss this until the cows come home in the middle of a crisis.”

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Colorado stands out among the 10 states that have disenrolled the highest share of Medicaid beneficiaries since the U.S. government lifted a pandemic-era restriction on removing people from the health insurance program.

It’s the only blue state in a cluster of red states with high disenrollment rates — a group that includes Idaho, Montana, Texas, and Utah — in the Medicaid “unwinding” underway since spring 2023.

Colorado also is the only state that had all the policy ingredients in place to cushion the fallout from the unwinding, according to Medicaid policy analysts at KFF.

But it seems the cushion hasn’t been deployed.

“There’s really a divide in Colorado between our progressive policies and our underfunded and fragmented administration,” said Bethany Pray, chief legal and policy officer at the Colorado Center on Law and Policy, a Denver-based legal aid group.

According to KFF data, during the unwinding Colorado has seen a bigger net drop in enrollment in Medicaid and the Children’s Health Insurance Program than any state except Utah.

Advocates for health care access, researchers, and county administrators — the administrators handling the bulk of the Medicaid redeterminations in Colorado — say that the major issues involve outdated technology and low rates of automatic renewals. Both create obstacles to enrollment that undercut the state’s progressive policies.

State officials have a rosier view. They say the drop in enrollment is a sign that they did a good job enrolling people at the height of the covid-19 pandemic. Secondly, they say Colorado’s economy is doing well, so more people can get insurance through their jobs.

“When we have a really stellar unemployment rate, not as many people need safety-net programs, and we’re proud of that. Our people are rising and thriving,” said Kim Bimestefer, who leads the Department of Health Care Policy and Financing and is the state’s top Medicaid official. Her department has also said that some people choose not to fill out their eligibility paperwork because they know their incomes are too high to qualify.

Bureau of Labor Statistics data shows that while it’s true Colorado’s unemployment rate is lower than the nation’s as a whole, it’s higher than it was before the pandemic.

State officials say they believe Medicaid enrollments dropped because many of those people found jobs, as reflected by the lower unemployment rates. But that scenario happened in fewer than half of the state’s counties, a KFF Health News analysis found. Notably, in 11 counties where unemployment stagnated or increased from January 2020 to April 2024, the share of the population covered by Medicaid shrank. A low unemployment rate does not necessarily mean there is less of a need for Medicaid coverage, because many employed people earn wages low enough to still qualify for the program.

Colorado increased enrollment in Medicaid and the related Children’s Health Insurance Program by 35% during the covid public health emergency, compared with about 30% nationally and among Medicaid expansion states.

“We grew more, which means, logically, we’re going to disenroll more,” said Bimestefer. “We went up higher, we’re going to come down lower, because our economy is stellar.”

Her department’s website initially claimed Colorado’s Medicaid enrollment grew more than any other Medicaid expansion state except Hawaii. But data from the Centers for Medicare & Medicaid Services shows pandemic enrollment growth in other states, including Indiana, North Dakota, Virginia, and Nevada, also exceeded that of Colorado.

Even if it had grown the most, the argument that what comes up must come down doesn’t hold water, Medicaid policy analysts said.

“A counterargument to that is we know that there was never a full participation in Medicaid prior to the pandemic,” said Jennifer Tolbert, deputy director of the KFF Program on Medicaid and the Uninsured.

Tolbert said she was surprised by the extent of Colorado’s Medicaid enrollment losses, given it was the one state in the nation that met all the criteria that KFF expected would cushion the effects of the unwinding. Those policies include adopting the Affordable Care Act’s Medicaid expansion and the automatic processing of renewals.

Tolbert was among several policy researchers who said that even if unemployment returned to pre-pandemic levels, they would expect a higher, not lower, share of Coloradans to be enrolled in safety-net coverage.

Ally Sullivan, a spokesperson for Gov. Jared Polis, a Democrat, said one complicating factor in Colorado’s system is that it’s among the handful of states where most of the eligibility verification work falls on counties, “which added complexity to the state’s unwind process.”

“Colorado is committed to ensuring that Coloradans who no longer qualify for Medicaid coverage are connected to other affordable sources of coverage as soon as possible, and the state is going to great lengths to do so,” the statement said.

Minnesota is another state where verifying eligibility is largely left to the counties. Yet it disenrolled just 26% of its Medicaid population in the unwinding, compared with Colorado’s 48%. Like Colorado, Minnesota is led by a Democratic governor. Minnesota also mirrors Colorado in its population, pandemic-era increase in enrollment, the percentage of its residents living in prosperous areas, and its better-than-national unemployment rate. But Bimestefer dismissed any comparison.

“I don’t care about Minnesota,” Bimestefer said. “This is Colorado. I don’t care what Minnesota did.”

Advocates for health care access and researchers said a cluster of technological and administrative issues have contributed to Colorado’s high disenrollment rate.

First, Colorado’s eligibility database, the Colorado Benefits Management System, is outdated and clunky, according to people who use it or are familiar with systems in other states.

“It’s like still using the old flip phone where you’re trying to play Snake,” said Sarah Grusin, an attorney at the National Health Law Program. “We have better stuff.”

Grusin and Pray’s organizations filed a civil rights complaint with several federal agencies saying that the system issues that terminated disabled Coloradans’ coverage amounted to discrimination.

“It took many months to fix something that doesn’t sound that complicated,” Pray said.

Bimestefer said her department is working on a plan to improve the system, which is managed by Deloitte under a $354.4 million contract that lasts until 2027. A recent KFF Health News investigation of eligibility systems managed by Deloitte found widespread problems. In Colorado, a state-commissioned audit in 2020 found that many Medicaid beneficiaries were sent incorrect notices and deadlines.

Kenneth Smith, a Deloitte executive who leads its national human services division, said that Deloitte is one player among many who together administer Medicaid benefits, and that the states own the technology and make the decisions about their implementation.

Colorado’s technology woes have also weakened its ability to use a powerful tool in enrollment: automatic renewal.

Last fall, Bimestefer said, her agency had to choose between fixing the system so that it would stop disenrolling children who shouldn’t lose coverage, or start automatically renewing people with no income or with income below the federal poverty level. It couldn’t do both, she said.

Experts such as Tricia Brooks, a research professor with the Center for Children and Families at Georgetown University, said it’s especially important to increase automatic renewals in states like Colorado where most of the renewal work falls on county government staff.

“What happens when you’re not getting a high rate of automated renewals? You’re sending out those renewal forms,” Brooks said — meaning more disenrollments. “They didn’t get the mail. The notice was confusing. They tried to get help through the call center. The list goes on as to why people don’t renew.”

Indeed, two-thirds of disenrolled Coloradans lost coverage for procedural reasons. That’s in line with the national average, according to KFF. But paired with Colorado having disenrolled so many people overall, that means more than 500,000 Coloradans, or about 9% of the state’s people, were disenrolled for procedural reasons — more than the population of its second-largest city, Colorado Springs.

At least a third of those disenrolled were later determined to be eligible for Medicaid.

Officials at Colorado community health centers and mental health centers say they’re seeing a rise in uninsured patients coming through their doors — a sign, they say, that Coloradans dropped from Medicaid aren’t necessarily moving on to greener health insurance pastures.

Fifty-eight percent of those who were disenrolled have returned to Medicaid, or now have another form of insurance. But the state doesn’t yet know what happened to the remaining 42% of people who were dropped and said it would conduct a survey to find out.

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A medida que la gripe aviar se propaga entre las vacas lecheras en Estados Unidos, veterinarios e investigadores han tomado nota de la decisión de Finlandia de vacunar a los trabajadores agrícolas que corren el riesgo de infectarse. Y se preguntan por qué su gobierno no se hace lo mismo.

“Los trabajadores agrícolas, veterinarios y productores están manejando grandes volúmenes de leche que pueden contener altos niveles del virus de la gripe aviar”, dijo Kay Russo, veterinaria de ganado y aves de corral en Fort Collins, Colorado. “Si una vacuna parece proporcionar algo de inmunidad, creo que también habría que ofrecérsela a ellos”.

La mayoría de una docena de expertos en virología y brotes epidémicos entrevistados por KFF Health News, está de acuerdo con Russo.

Dijeron que a las personas que trabajan en tambos se les debería ofrecer la vacuna contra una enfermedad que ha matado a aproximadamente la mitad de las personas que se sabe que la han contraído en todo el mundo durante las últimas dos décadas, que ha matado a gatos en Estados Unidos este año, y que tiene potencial pandémico.

Sin embargo, otros investigadores están de acuerdo con la posición de los Centros para el Control y Prevención de Enfermedades (CDC), que recomiendan no vacunar por ahora. Consideran que no hay evidencia de que el virus de la gripe aviar de este año se propague entre personas, o cause enfermedad grave en humanos. Y que tampoco está lo suficientemente claro qué tan eficaz es la vacuna disponible a la hora de prevenir cualquiera de estos escenarios.

Sin embargo, para Jennifer Nuzzo, directora del Centro Pandémico de la Universidad Brown, la táctica de esperar y ver “es una apuesta”. “Para cuando tengamos consecuencias graves, muchas personas ya se habrán contagiado”, aseguró.

“Ahora es el momento de ofrecer las vacunas a los trabajadores agrícolas en Estados Unidos”, dijo Nahid Bhadelia, directora del Centro de Enfermedades Infecciosas Emergentes de la Universidad de Boston. Agregó que en el país hasta las medidas más apremiantes están retrasadas. Bhadelia considera que es urgente realizar análisis tanto a los trabajadores agrícolas como a las vacas para detectar la presencia del virus de la gripe aviar H5N1, estudiarlo y erradicarlo antes de que se establezca en las granjas, lo que representaría una amenaza pandémica constante.

Demetre Daskalakis, director del Centro Nacional de Inmunización y Enfermedades Respiratorias de los CDC, explicó que la agencia se toma muy en serio a la gripe aviar y que se están almacenando 4.8 millones de dosis de la vacuna. Pero admitió que “no hay ninguna recomendación para lanzar una campaña de vacunación”.

“Se trata de la relación riesgo-beneficio”, comentó Daskalakis. Los beneficios todavía son inciertos porque no contamos con suficientes testeos como para entender con qué facilidad el virus pasa de las vacas a las personas, y tampoco sabemos cuán grave puede ser la enfermedad.

Este año, en Estados Unidos, solo cuatro personas han dado positivo y fueron casos leves. Es un número muy limitado, que no permite sacar conclusiones definitivas.

También informaron que han estado enfermos otros trabajadores agrícolas y veterinarios que trabajan en granjas lecheras donde se han detectados casos de gripe aviar. Sin embargo, no se les hicieron los análisis correspondientes. Desde que se detectó el brote en marzo, los hospitales públicos han examinado solo a unas 50 personas que podrían haberse contagiado.

De todos modos, Daskalakis aseguró que los CDC no están preocupados por la posibilidad de que la agencia esté pasando por alto infecciones significativas de gripe aviar debido a su sistema de vigilancia de la influenza. Los hospitales reportan pacientes con casos graves de gripe y este año los números se mantienen normales.

Otro indicio que tranquiliza a la agencia es que el virus aún no ha desarrollado mutaciones que le permitan propagarse rápidamente cuando la gente estornuda o respira. “Si comenzáramos a ver cambios en el virus, ese sería un factor que incidiría en la decisión de pasar de una fase de planificación a una fase operativa”, explicó Daskalakis.

Para evaluar si administrar o no las vacunas, la agencia se basó en el brote de gripe porcina de 1976. En aquel momento, los funcionarios temían que se pudiera repetir la pandemia de gripe porcina de 1918, que mató aproximadamente a medio millón de personas en Estados Unidos. Por lo tanto, en un año vacunaron rápidamente a casi 43 millones de personas.

Pero ese año los casos de gripe porcina resultaron ser leves. Esto hizo que la campaña de vacunación se considerara innecesariamente riesgosa ya que surgieron varios informes de un trastorno potencialmente mortal, el síndrome de Guillain-Barré.

Hay que tener en cuenta que, según los CDC, aproximadamente una persona de cada millón que son vacunadas contra la influenza puede desarrollar ese síndrome. En el balance, el beneficio de la prevención supera al riesgo. Desde el 1 de octubre por lo menos 830,000 personas han sido hospitalizadas por la gripe estacional y entre 25,000 y 75,000 han muerto.

Un informe elaborado tiempo después respecto de las acciones frente a la gripe porcina de 1976 habló de una “experiencia aleccionadora y con moraleja” sobre qué pasa si se responde prematuramente a una amenaza incierta para la salud pública.

“Es una historia sobre lo que sucede cuando lanzas un programa de vacunación en el que se está aceptando correr riesgos sin que haya un beneficio demostrado”, señaló Daskalakis.

Paul Offit, virólogo del Hospital Infantil de Philadelphia, se alinea con la decisión que tomaron los CDC. “Esperaría a tener más datos”, dijo.

Sin embargo, otros investigadores dicen que el escenario de 1976 fue distinto. Nadie está sugiriendo vacunar a decenas de millones de personas: se está hablando de una vacuna totalmente voluntaria para los miles de trabajadores que están en contacto cotidiano con el ganado, lo que reduce la posibilidad de efectos adversos raros.

La vacuna contra la gripe aviar que está disponible, fabricada por la empresa de vacunas contra la gripe CSL Seqirus, fue autorizada el año pasado por el equivalente europeo de la Administración de Drogas y Alimentos (FDA). Una versión previa tiene la aprobación de la FDA, pero la más reciente aún no recibió la luz verde.

Aunque la vacuna está dirigida a una cepa diferente de gripe aviar que la H5N1, que es la que circula actualmente entre las vacas, los estudios muestran que desencadena una respuesta inmune contra ambas variantes. Se considera segura porque utiliza la misma tecnología en base a huevo que se despliega cada año en las vacunas contra la gripe estacional.

Por estas razones, Estados Unidos, el Reino Unido, Holanda y otra docena de países están almacenando millones de dosis. Finlandia espera ofrecérselas este mes también a quienes trabajan en granjas peleteras, como precaución porque sus granjas de visones y zorros fueron golpeadas por la gripe aviar el año pasado.

En contraste, las vacunas de ARNm que se están desarrollando contra la gripe aviar serían las primeras de su tipo también para la influenza. El 2 de julio, el gobierno de Estados Unidos anunció que pagaría a la farmacéutica Moderna $176 millones por su desarrollo y que las vacunas podrían entrar en la etapa de ensayos clínicos el próximo año.

Utilizadas ampliamente contra covid-19, esta nueva tecnología emplea ARNm para enseñar al sistema inmune cómo reconocer virus particulares.

Mientras tanto, Florian Krammer, virólogo especializado en gripe en la Escuela de Medicina Icahn de Mount Sinai, señaló que las personas que trabajan en tambos deberían tener la opción de recibir la vacuna basada en huevo. Esta vacuna desencadena una respuesta inmunitaria contra un componente principal del virus H5N1 de la gripe aviar, lo que debería brindar un grado de protección contra la infección y la enfermedad grave, explicó.

Aun así, la protección no sería del 100%. Y nadie sabe cuántos contagios y hospitalizaciones podría prevenir esta vacuna, ya que no se ha utilizado para combatir el virus de este año. Esos datos deben recopilarse en estudios que rastreen qué resultado tuvo en las personas que opten por ser vacunadas, agregó.

A Krammer no lo tranquiliza que no se hayan detectado casos graves de gripe aviar en las clínicas. “Porque cuando los indicios llegan a los hospitales, significa que la situación ya se encuentra fuera de control, que estamos frente a una pandemia”, dijo. “Y eso es lo que queremos evitar”.

El virólogo y otros especialistas enfatizaron que Estados Unidos debería estar haciendo todo lo posible para frenar las infecciones antes de octubre, cuando comienza la temporada de gripe. La vacuna podría proporcionar una capa adicional de protección, que se sumaría a las evaluaciones, el uso de guantes y gafas, y la desinfección del equipo de ordeñe.

Algunos científicos temen que, si las personas contraen la gripe aviar y la gripe estacional simultáneamente, los virus de la gripe aviar podrían generar adaptaciones de los virus estacionales que les permitieran propagarse rápidamente entre humanos.

También dicen que podría llevar meses distribuir las vacunas después que se recomiende oficialmente, ya que ese tipo de campaña requiere grandes esfuerzos de divulgación.

Bethany Boggess Alcauter, directora de investigación del National Center for Farmworker Health, comentó que las personas que trabajan con vacas lecheras aún carecen de información sobre el virus, cuatro meses después del inicio de este brote.

Los funcionarios de salud han hablado con los propietarios de tambos, pero las entrevistas de Boggess con los trabajadores agrícolas permiten pensar que esas conversaciones no han llegado a su personal.

Un trabajador agrícola en el Panhandle de Texas le contó a Boggess que en su trabajo le dijeron que se desinfectara las manos y las botas para proteger a las vacas de enfermedades que los trabajadores puedan transmitir. “Nunca nos dijeron que la vaca podría infectarnos con alguna enfermedad”, dijo el hombre en español.

El ritmo siempre lento en que se divulga la información es un recordatorio de que todo lleva tiempo, incluidas las decisiones sobre vacunación. Para resolver si recomendar las vacunas, los CDC normalmente buscan orientación de su Comité Asesor sobre Prácticas de Inmunización, o ACIP. Un consultor del grupo, el investigador de enfermedades infecciosas William Schaffner, ha pedido repetidamente a la agencia que presente su opinión sobre la vacuna contra la gripe aviar de Seqirus.

En lugar de preocuparse por la situación de la gripe porcina de 1976, Schaffner sugirió que los CDC consideren la pandemia de gripe porcina de 2009-10. Esta pandemia causó más de 274,000 hospitalizaciones y 12,000 muertes en Estados Unidos en un año. Para cuando comenzó la vacunación, dijo, gran parte del daño ya estaba hecho.

“El momento de discutir esto con ACIP es ahora”, sostuvo Schaffner. Es decir, antes de que la gripe aviar se convierta en una emergencia de salud pública. “No queremos que se comience a discutir cuando ya sea demasiado tarde”.

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Philadelphia. — Zarinah Lomax es una documentalista poco común. Ha diseñado vestidos con las cintas amarillas de escenas de crimen y abrigos con leyendas pintadas a mano que dicen: “No Disparen”, en dorado, negro y púrpura. Cada pocos meses, transporta docenas de retratos de habitantes de Philadelphia —caras vibrantes, audaces y más grandes que la vida misma— a galerías temporales para alertar sobre la violencia armada en su ciudad natal, y en América.

En un depósito, Lomax estima que tiene unos mil lienzos, en su mayoría de jóvenes que murieron por disparos, y otros de madres, hermanas, amigos y dolientes que se preguntan por qué.

“El propósito no es hacer llorar a la gente”, dijo Lomax, una nativa de Philadelphia que ha viajado a Nueva York, Atlanta y Miami para colaborar en exhibiciones similares sobre este trauma. “Es para que las familias y las personas que han pasado por esto sepan que no son olvidadas”.

Cada persona “no es un número. Este es el hijo de alguien. La hija de alguien que estaba trabajando en algo”, dijo. “Los retratos no son solo retratos. Nos están diciendo cuáles son las consecuencias de lo que está sucediendo en nuestras ciudades”.

Las armas de fuego en 2020 se convirtieron en la causa número uno de muerte en niños y adolescentes menores de 18 años —tanto por suicidios como por agresiones— y una nueva investigación sobre la crisis de salud pública del Instituto Blavatnik de la Escuela de Medicina de Harvard muestra cómo esas pérdidas se extienden a través de familias y vecindarios, con costos económicos y psicológicos significativos.

El 25 de junio, Vivek Murthy, cirujano general de Estados Unidos, declaró a la violencia armada como una crisis de salud pública, remarcando: “Cada día que pasa perdemos más niños por la violencia armada. Cuantos más niños presencian episodios de violencia armada, más niños que son heridos por disparos y sobreviven están lidiando con impactos físicos y mentales de por vida”.

Philadelphia ha registrado más de 9,000 tiroteos fatales y no fatales desde 2020, con aproximadamente el 80% de las víctimas identificadas como negras no hispanas, según el controlador de la ciudad. Entre los heridos o muertos, aproximadamente el 60% tenía 30 años o menos.

Lomax ha sido una fuerza singular para que las estadísticas no se olviden. Desde 2018, cuando un joven amigo que estaba a punto de graduarse de la Universidad Estatal de Pennsylvania fue asesinada a tiros un domingo por la tarde en Philadelphia, Lomax se propuso apoyar la sanación entre aquellos que experimentan violencia.

Lanzó un programa en PhillyCAM, un canal de medios de acceso comunitario, para alentar a las personas a hablar sobre armas, opioides y el duelo. Organizó desfiles de moda con artistas locales y familias que se centraron en dar testimonio del sufrimiento. Se centró en el retrato, contactando a artistas locales para conmemorar las vidas, no las muertes, de los jóvenes de Philadelphia.

Comenzó a rastrear tiroteos en las redes sociales, en las noticias y a veces de boca en boca. En 2022, el Ayuntamiento abrió tres pisos para una notable exhibición de vidas perdidas, organizada por Lomax y creada por docenas de artistas.

Recientemente compartió los retratos en una cumbre patrocinada por la organización sin fines de lucro Brady: United Against Gun Violence y CeaseFirePA. La reunión ofreció orientación sobre la aplicación de regulaciones para prevenir compras de armas que impulsan el crimen y proporcionó datos sobre el tráfico de armas a través de las fronteras estatales.

Lomax sabía que el arte, exhibido a lo largo del escenario, ponía en evidencia la importancia del tema.

Miren estas caras, dijo ella. Estas personas eran prometedoras. ¿Qué pasó? ¿Qué se puede hacer?

Lomax, ahora de 40 años, dijo que las conversaciones que inicia tienen un propósito. Algunos cuadros los regala a las familias. Otros los guarda para futuras exhibiciones.

“Esto no es lo que me propuse hacer en la vida”, dijo ella. “Cuando estaba creciendo, pensé que sería enfermera. Pero supongo que de esta forma estoy cuidando a las personas”.

En lo que va del año, Philadelphia ha visto una disminución en el número de asesinatos, según una base de datos en línea de AH Datalytics, pero se encuentra entre las cinco ciudades principales en conteo de asesinatos. El año pasado, los investigadores de Harvard establecieron que las comunidades y familias quedan vulnerables por las lesiones con armas de fuego.

El estudio de 2023 dirigido por Zirui Song, profesor asociado de política de atención médica en Harvard, examinó datos relacionados con recién nacidos hasta los 19 años. La investigación documentó un costo económico “masivo”, con un aumento promedio de $35,000 en el gasto en atención médica para los sobrevivientes en el año posterior a un tiroteo, y desafíos de salud mental que alteran la vida.

Los sobrevivientes de tiroteos y sus cuidadores, ya sea lidiando con lesiones físicas o miedo generalizado, a menudo luchan con “lesiones invisibles y duraderas, incluidos trastornos psicológicos y de uso de sustancias”, según Song, quien también es internista general en el Hospital General de Massachusetts.

Su estudio encontró que los padres de niños heridos experimentaron un aumento del 30% en trastornos psiquiátricos en comparación con los padres cuyos hijos no sufrieron heridas de bala.

Desiree Norwood, quien pinta con acrílicos, ha estado ayudando a Lomax desde 2021. Como a todos los artistas, Lomax le paga. Ha completado unos 30 retratos, siempre después de sentarse con la familia de la víctima. “Obtengo una historia de fondo para poder incorporarla en el retrato”, dijo. “A veces lloramos. A veces rezamos. A veces tratamos de animarnos mutuamente. Es difícil de hacer”.

“Espero que un día no tenga que pintar otro retrato”, dijo Norwood, madre de cinco hijos. “La idea de que Zarinah haya tenido tantas exhibiciones, con numerosas personas que han muerto, es aterradora y desgarradora”.

Mike Doughty, un artista digital autodidacta, fue uno de los que querían ayudar a “honrar y ofrecer una mejor mirada de quiénes eran estas personas”. Doughty, un empleado de la ciudad que trabaja en un juzgado, puede ser mejor conocido Philadelphia por una serie de murales en los que ha agrupado a famosos nacidos en la ciudad como Will Smith, Grace Kelly y Kevin Hart.

Ha producido unos 150 retratos en su iPad y laptop, trabajando con el grupo sin fines de lucro de Lomax, The Apologues, para ponerle rostro a una frase, incrustada en una escena, que transmite el potencial perdido de la juventud.

“Al principio fue difícil de hacer,” dijo Doughty, quien trabaja a partir de fotografías familiares. “Miro y pienso: Son niños. Solo niños”.

Una vez, recibió un mensaje de texto de Lomax buscando un retrato de un rapero que reconoció de espectáculos de arte y música. Otro día, abrió un correo electrónico y encontró una foto de un hombre que conocía de la escuela secundaria. En mayo, Doughty compartió en Instagram su proceso de trabajo para un retrato de Derrick Gant, un rapero con el nombre artístico Phat Geez, que fue asesinado a tiros en marzo.

El asesinato ocurrió unas semanas después que el rapero lanzara “No Gunzone”, un video musical que hace referencia a una cuenta de Instagram que promueve esfuerzos contra la violencia en la ciudad.

Doughty, de 33 años, que creció en la sección Nicetown del norte de Philadelphia, señaló irónicamente: “No era tan agradable”. Las exhibiciones de Lomax, dijo, permiten a las familias, incluso a los vecindarios, procesar el dolor y el sufrimiento.

“Fui a la última y una madre se acercó y dijo, ‘¿Dibujaste el retrato de mi hijo?’ Simplemente cayó en mis brazos, llorando. Fue un momento tan emotivo”, contó. “Y un recordatorio de por qué hacemos lo que hacemos”.

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With the Environmental Protection Agency’s latest — and strictest — plan to minimize the risk of Americans drinking lead-contaminated water on the horizon, the debate over whether the rules go too far or not nearly far enough is reaching a tipping point.

Although lead was banned from new water service lines in 1986, it’s estimated that more than 9 million such lines still carry drinking water to homes and businesses throughout the country. Under the EPA’s Lead and Copper Rule Improvements proposal, water utilities would be required to replace all lead-containing lines within 10 years.

The proposal from the Biden administration builds on different rules put out in the waning days of the Trump term that allowed up to 30 years for service line replacement, triggered only when lead levels test higher than 15 parts per billion. The new proposal, which would largely supplant the Trump rules, calls for stricter monitoring, enhanced public education, and the 10-year pipe replacement mandate regardless of lead levels.

An October deadline looms for the new rules to be adopted; otherwise, enforcement of the less-stringent Trump administration rules will begin. And complicating matters more: November’s election results could shake up whose rules the nation must follow.

While many cities and states have begun to replace their lead pipes, some utilities and officials say the 10-year time frame is unfeasible and too expensive. They say it would be difficult for water utilities to follow the rules while dealing with new EPA limits on five PFAS contaminants, known as “forever chemicals,” and failing pipes, among other issues.

“Nobody will tell you that having lead in contact with water is a great idea,” said Steve Via, director of federal relations for the American Water Works Association, the country’s largest nonprofit water utility industry group. “The question becomes: How urgent a matter is it, and at what pace does it need to be done?”

Already, 15 Republican state attorneys general have argued that the proposed rules infringe on states’ rights and chase “speculative” benefits. On the other side, 14 Democratic attorneys general said that the EPA should find more ways to ensure pipes are quickly replaced in low-income areas.

To be sure, no amount of lead is considered safe to consume. Lead is a neurotoxin known to cause irreversible long-term organ damage, lower IQs, higher risk for miscarriage, asthma, cardiovascular disease, impotence, and elevated blood pressure.

Public health advocates say societal costs — in health care, social services, and lost productivity — far outweigh the cost of replacement. They say corrosion controls that have limited lead exposure can and do fail, pointing to human and systemic errors that prompted the water crisis in Flint, Michigan, where thousands of people were exposed to high lead levels in their drinking water.

“That’s the whole thing about lead pipes: They unexpectedly release lead into drinking water,” said Roya Alkafaji, who manages an initiative focused on reducing lead exposure from water with the Environmental Defense Fund, a national advocacy group. “I don’t think kicking the can down the road is the solution.”

According to a 2023 analysis by Ronnie Levin, an instructor at Harvard’s T.H. Chan School of Public Health, the benefit of replacing lead pipes outweighs the costs by a 35:1 ratio.

Using the EPA’s estimated $335 million annual costs from the Trump rules, which include water sampling, corrosion control treatments, inventorying and replacement of lead service lines, and educational outreach, Levin’s analysis shows that $9 billion in annual health care costs could be avoided. An additional $2 billion in spending — through upgraded infrastructure and reduced corrosion damage to appliances — could be saved. The broad spectrum of health-related costs has historically been ignored in analyzing the actual costs of leaving lead service lines in place, said Levin, a former EPA scientist.

Estimates of the cost to replace the nation’s lead pipes range from $46 billion to more than $90 billion, far higher than the $15 billion set aside in the Bipartisan Infrastructure Law. The Biden administration has framed those funds as a down payment, 49% of which will be grants or principal forgiveness loans allocated on the basis of the estimated number of lead pipes per state. Other funding programs can also be tapped.

Replacement costs vary widely by location, with average costs ranging from the EPA’s 2019 estimate of $4,700 per service line to $12,500 from Via’s utilities trade group.

Carolyn Berndt, legislative director for sustainability at the National League of Cities, said funding challenges could render the EPA’s 10-year timeline unrealistic. While her organization is encouraging local leaders to secure as much funding as possible, what’s available won’t be enough to cover replacement costs for some localities — especially low-income areas, which often have older infrastructure and more lead pipes.

Some direct costs could fall to property owners, such as replacing the lines connecting their water meters to their homes. And people could face indirect costs if utilities increase customer rates to offset the expense.

Still, some communities, such as Olathe, Kansas, are finding ways to move forward with a patchwork of funding. Out of 37,000 service lines there, 266 galvanized pipes were found serving downtown properties, where many of the city’s most vulnerable residents live. The coating for galvanized pipes typically contains lead.

Workers will replace the lines at no cost to property owners in the city of 147,000 people outside Kansas City, said Megan Spence, who is overseeing the city project. It is expected to cost around $2.3 million, paid for with a loan from the Kansas Department of Health and Environment and about $1.2 million in federal infrastructure funding. About $500,000 for lawn restoration is included.

“We’re really looking at this as an opportunity and another way to protect public health,” said Spence. “There shouldn’t be any lead lines in any drinking water distribution systems.”

Elsewhere, some Republicans, such as Indiana state Sen. Eric Koch, are leading the charge to replace the pipes despite historical pushback in conservative states against federal mandates. He said lawmakers should consider the harm — and long-term costs — caused by delaying the cleanup of lead from drinking water.

In March, Indiana’s Republican Gov. Eric Holcomb signed a unanimously approved bill, which Koch authored, designed to lower costs for replacing customer-owned lead service lines. Under the law, landlords are required to enroll in a state-approved program to have their lead pipes removed at no cost by their water utility or pay for replacement themselves.

Koch said estimates for replacing customer-owned service lines are around $8,000, though the cost could be significantly higher for some properties. But by starting the work now, Koch said, utilities can avoid price inflation and ultimately remove pipes more cost efficiently.

Meanwhile, time is running out to publish the Biden administration’s proposed rules in the Federal Register. Water utilities will be required to comply with the Trump rules as of Oct. 16 unless the EPA publishes the newer rules before then, said Erik Olson, a senior strategic director of the National Resources Defense Council, an advocacy group. It remains unknown what the June 28 Supreme Court ruling on agency rulemaking, known as the “Chevron deference” decision, will mean for either set of rules.

A deadline is also looming for the 60-day “look-back” period under the Congressional Review Act, during which a regulation can be repealed. If control of Congress or the White House flips with the November election, the Biden administration’s rules could be repealed under an emboldened Congress even before the January swearing in of new officeholders.

“Depending on how the election goes, it could become a hot issue,” said Tom Neltner, national director of the advocacy organization Unleaded Kids.

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PHILADELPHIA — Zarinah Lomax is an uncommon documentarian of our times. She has designed dresses from yellow crime-scene tape and styled jackets with hand-painted demands like “Don’t Shoot” in purple, black, and gold script. Every few months, she hauls dozens of portraits of Philadelphians — vibrant, bold, bigger-than-life faces — to pop-up galleries to raise an alarm about gun violence in her hometown and America.

In a storage unit, Lomax has a thousand canvasses, she estimates, mostly of young people who died from gunfire, and others of the mothers, sisters, friends, and mourners left to ask why.

“The purpose is not to make people cry,” said Lomax, a Philadelphia native who has traveled to New York, Atlanta, and Miami to collaborate on similar exhibitions on trauma. “It is for families and for people who have gone through this to know that they are not forgotten.”

Each person “is not a number. This is somebody’s child. Somebody’s son, somebody’s daughter who was working toward something,” she said. “The portraits are not just portraits. They are telling us what the consequences are for what’s happening in our cities.”

Firearms in 2020 became the No. 1 cause of death for children and teens under 18 — from both suicides and assaults — and fresh research on the public health crisis from Harvard Medical School’s Blavatnik Institute show how those losses ripple through families and neighborhoods with significant economic and psychological costs.

On June 25, U.S. Surgeon General Vivek Murthy declared gun violence a public health crisis, noting: “Every day that passes we lose more kids to gun violence. The more children who are witnessing episodes of gun violence, the more children who are shot and survive that are dealing with a lifetime of physical and mental health impacts.”

Philadelphia has recorded more than 9,000 fatal and nonfatal shootings since 2020, with about 80% of the victims identified as Black, according to the city controller. Among those injured or dead, about 60% were age 30 or younger.

Lomax has been a singular, and perhaps unlikely, force in making the statistics unforgettable. Since 2018, when a young friend poised to graduate from Penn State University was shot to death on a Sunday afternoon in Philadelphia, Lomax has set out to support healing among those who experience violence.

She launched a show on PhillyCAM, a community access media channel, to encourage people to talk about guns and opioids and grief. She organized fashion shows with local artists and families that focused on bearing witness to distress. She seized on portraiture, reaching out to local artists to memorialize the lives, not the deaths, of Philadelphia’s young. She began tracking shootings on social media, in news accounts, and sometimes by word of mouth. In 2022, City Hall opened three floors to a remarkable exhibition of lost lives, organized by Lomax and created by dozens of artists.

She recently shared the portraits at a summit sponsored by the nonprofit Brady: United Against Gun Violence and CeaseFirePA. The meeting offered guidance on enforcing regulations to prevent straw gun purchases that propel crime and provided data on weapon trafficking across state lines. Lomax knew the art, displayed along the stage, brought home the stakes.

Look at these faces, she said. These people had promise. What happened? What can be done?

Lomax, now 40, said the conversations she starts have purpose. Some paintings she gives to families. Others she stores for future exhibits.

“This is not what I set out to do in life,” she said. “When I was growing up, I thought I’d be a nurse. But I guess I am kind of nursing people this way.”

So far this year, Philadelphia has seen a drop in the number of murders, according to an online database by AH Datalytics, but ranks among the top five cities in murder count. Last year, the Harvard researchers established that communities and families are left vulnerable by gun injuries.

The 2023 study led by Zirui Song, an associate professor of health care policy at Harvard Medical School, examined data related to newborns through age 19. The research documented a “massive” economic toll, with health care spending increasing by an average of $35,000 for survivors in the year after a shooting, and life-altering mental health challenges.

Survivors of shootings and their caregivers, whether dealing with physical injuries or generalized fear, often struggle with “long-lasting, invisible injuries, including psychological and substance-use disorders,” according to Song, who is also a general internist at Massachusetts General Hospital. His study found that parents of injured children experienced a 30% increase in psychiatric disorders compared with parents whose children did not sustain gunshot injuries.

Desiree Norwood, who paints with acrylics, has been helping Lomax since 2021. Like all the artists, she’s paid by Lomax. She has completed about 30 portraits, always after sitting down with the subject’s family. “I get a backstory so I can incorporate that in the portrait,” she said. “Sometimes we cry. Sometimes we pray. Sometimes we try to uplift each other. It is hard to do.”

“I hope one day I would not have to paint another portrait,” said Norwood, a mother of five children. “The idea that Zarinah has had so many exhibits, with numerous people who have died, is scary and heartbreaking.”

Mike Doughty, a self-taught digital artist, was among those who wanted to help to “honor and to offer a better look at who these people were.” Doughty, a city employee who works at a courthouse, may be best known within Philadelphia for a series of fanciful murals in which he has grouped famous natives such as Will Smith, Grace Kelly, and Kevin Hart.

He has produced about 150 portraits on his iPad and laptop, working with Lomax’s nonprofit group, The Apologues, to best match a face with a phrase, embedded in the scene, that telegraphs the lost potential of youth.

“At the beginning it was hard to do,” said Doughty, who works from family photographs. “I look and I think: They are kids. Just kids.”

One time, he received a text from Lomax seeking a portrait of a rapper he recognized from art and music shows. Another day, he opened an email to find a photo of a man he knew from high school. In May, Doughty shared on Instagram his work process for a portrait of Derrick Gant, a rapper with the stage name Phat Geez, who was gunned down in March. The killing happened a few weeks after the rapper released “No Gunzone,” a music video referring to an Instagram account that promotes anti-violence efforts in the city.

Doughty, 33, who grew up in the Nicetown section of north Philadelphia, wryly noted: “It wasn’t so nice.” Lomax’s exhibitions, he said, allow families, even neighborhoods, to sort through sorrow and pain.

“I went to the last one and a mother came up and said, ‘Did you draw my child’s portrait?’ She just fell into my arms, crying. It was such a moment,” he said. “And a reminder on why we do what we do.”

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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When hospitals are hit by cyberattacks that compromise crucial technology systems for managing patient care, the stakes are staggering.

“We’ve started to think about these as public health issues and disasters on the scale of earthquakes or hurricanes,” said Jeff Tully, a co-director of the Center for Healthcare Cybersecurity at the University of California at San Diego.

Many hospitals are unprepared for long outages, cybersecurity experts say. And the federal government has offered little in the way of required protocols or standards to protect patient safety in attacks on the health sector, which have risen precipitously in recent years.

Long-held concerns about protecting patients’ sensitive health information have been overtaken by fears of harm to patients themselves. Kate Wells and I dug into one of the latest and biggest examples for the news organization Michigan Public and KFF Health News: the ransomware attack against Ascension that for weeks locked clinicians out of electronic health records, medication systems and other technology at one of the nation’s largest health systems.

The federal government requires hospitals to protect patient data, according to cybersecurity experts. Yet there are no requirements for hospitals to have basic cybersecurity protocols in place, which could include things like multifactor authentication, email controls and basic cybersecurity training for employees. The Biden administration, however, has indicated it will soon attempt to institute some mandatory measures.

When Denise Anderson, president of the Health Information Sharing and Analysis Center, began working in the health sector, federal officials were focused mostly on data privacy and the Health Insurance Portability and Accountability Act (HIPAA), the landmark 1996 patient privacy law.

“We weren’t pairing cybersecurity and health care in the same sentence,” said Anderson, whose organization works to protect the health sector from physical and cyberthreats.

Lawmakers have taken notice. “It is clear that HHS’ current approach to healthcare cybersecurity — self-regulation and voluntary best practices — is woefully inadequate and has left the health care system vulnerable to criminals and foreign government hackers,” Sen. Ron Wyden (D-Ore.) wrote in a June 5 letter to Health and Human Services Secretary Xavier Becerra.

Clinicians working for Ascension hospitals say the cyberattack led to harrowing lapses, including delayed or lost lab results, medication errors and an absence of routine safety checks via technology to prevent potentially fatal mistakes. More than a dozen doctors and nurses who work for the sprawling health system told Michigan Public and KFF Health News that patient care at its hospitals was compromised in the fallout of the cyberattack.

Ascension declined to answer questions about claims that care has been affected by the ransomware attack. “We are confident that our care providers in our hospitals and facilities continue to provide quality medical care,” Sean Fitzpatrick, Ascension’s vice president of external communications, said last month.

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“Elective abortions up to and including the moment of birth. Healthy, 9-month-year-old baby killed at the moment of birth. That’s what Jon Tester and the Democrats have voted for.”

Tim Sheehy, Montana GOP candidate for U.S. Senate, said in a June 8 debate

Tim Sheehy, the Republican candidate seeking to unseat Democratic Sen. Jon Tester of Montana and give U.S. Senate control to the GOP, is campaigning on what he calls Tester’s and Democrats’ “extreme” position on abortion.

In a televised debate June 8, Sheehy accused Tester and Democrats of voting for “elective abortions up to and including the moment of birth.” That statement prompted Tester to respond: “To say we’re killing babies at 40 weeks is total BS.”

Sheehy has made this accusation on his campaign website, which says, “Jon Tester supports elective abortion on demand up until the moment of birth. Think about that again: Jon Tester supports aborting a healthy, full-term baby the day before it’s due. That is the extreme position here.” Similar statements have been made in the campaign’s social media posts.

Painting the Democratic candidate with, in Sheehy’s words, an “extreme” position on abortion is a familiar conservative campaign strategy and campaign talking point this election cycle. But how does it hold up?

Some Recent History

Asked for evidence to support Sheehy’s accusations, Sheehy’s campaign spokesperson, Katie Martin, said the Republican candidate was referring to Tester’s vote for the Women’s Health Protection Act, which failed to pass the Senate in 2022. She cited the bill’s provisions that said health providers and patients would have the right to perform and receive abortion services without certain limitations or requirements impeding access.

Anti-abortion advocates say the measure, which has been reintroduced in the current Congress, would create a loophole eliminating any limits to aborting a fetus later in pregnancy. And, rather than define when a fetus is viable during pregnancy, the bill would leave the question of viability to the health provider, who is financially motivated to perform abortions, according to Susan B. Anthony Pro-Life America, a nonprofit group supporting anti-abortion candidates, including Sheehy.

“It would impose no-limits abortion on demand in all 50 states at any point in pregnancy,” said Marjorie Dannenfelser, president of SBA Pro-Life America.

In 2022, the legislation failed two votes in the Senate before the U.S. Supreme Court’s Dobbs v. Jackson Women’s Health Organization decision removed federal protections for abortion access and left the issue to the states to decide. Tester voted for the measure both times, but the bill failed to advance after votes of 46-48 and 49-51.

Alina Salganicoff, a KFF senior vice president and director of the nonprofit’s Women’s Health Policy Program, said nothing in the Women’s Health Protection Act supports an abortion up to the moment of birth. Rather, the legislation would allow a health provider to perform abortions without obstacles such as waiting periods, tests deemed medically unnecessary, unnecessary in-person visits, or other restrictions imposed by states.

The bill would explicitly allow an abortion after a fetus is viable when, according to the legislation, “in the good-faith medical judgment of the treating health care provider, continuation of the pregnancy would pose a risk to the pregnant patient’s life or health.”

“This is not abortion on demand until the moment of birth,” Salganicoff said. “Even if politicians and anti-abortion activists make this claim, there are no clinicians that provide ‘abortions’ moments before birth.”

Besides the Women’s Health Protection Act, the Sheehy campaign cited Tester’s opposition to “born-alive” legislation meant to protect babies who survive botched abortions.

“At what week does he think it’s inappropriate for medical providers to perform an abortion?” Martin said of Tester. “That would clear up his stance on the issue. Based on his voting record, it suggests he does, in fact, support abortion on demand up until the moment of birth.”

In 2002, Congress passed a “born-alive” law that gave legal protections to infants who survive abortions. A stalled 2022 bill sought to expand that law to add criminal penalties to health professionals who do not take steps to preserve the life of any child born. Montana voters rejected a similar ballot question in 2022.

Tester was elected to the Senate four years after the first bill passed and a vote was not taken on the 2022 measure.

Looking at the Data

Instances of fetuses surviving abortions are rare. So are abortions performed later in pregnancy: Just 1% of all abortions in the U.S. happen at or after 21 weeks of gestation. (The percentage of abortions that occur when the fetus is presumed to be viable, 24 weeks or later, is presumably lower, but the Centers for Disease Control and Prevention does not break out abortion rates for that period.)

An analysis by SBA Pro-Life America’s research arm, the Charlotte Lozier Institute, concluded that 6% of abortions performed in 2020, or an estimated 55,800 abortions, happened at or after 15 weeks of pregnancy.

“Most late-term abortions are elective, performed on healthy women with healthy babies for the same reasons given for first-trimester abortions,” Dannenfelser said.

SBA Pro-Life cites abortions at 15 weeks and later because that is the stage of development at which a fetus can feel pain, according to the group. That is the same rationale behind Republican Sen. Lindsay Graham’s 15-week abortion ban legislation introduced in 2022.

But the American College of Obstetricians and Gynecologists says “the science conclusively establishes” that a fetus does not have the capacity to feel pain until 24 or 25 weeks.

“Every medical organization that has examined this issue and peer-reviewed studies on the matter have consistently reached the conclusion that abortion before this point does not result in the perception of pain in a fetus,” according to the OB-GYN medical group.

Katrina Kimport, a professor in the University of California-San Francisco’s Department of Obstetrics, Gynecology & Reproductive Sciences, said “born-alive” laws are trying to regulate something that doesn’t happen.

Kimport, whose research involved interviewing 30 people in 2018 who had abortions after 24 weeks of pregnancy, and 10 more from 2021 to 2022, also criticized Sheehy’s use of “elective abortion.” In her view, that terminology reflects a political colloquialism that’s come to mean an abortion that is optional. That’s different from the medical definition, she said, in which an elective procedure is one that may be necessary but is not an emergency and can be scheduled for a particular date, such as knee surgery.

Women have abortions later in pregnancy either because they find out new information or because of economic or political barriers, Kimport said.

“I have never spoken to somebody whose abortion decision was not informed by deep thought and consideration,” she said.

Trying to Change the Debate

Mary Ziegler is a University of California-Davis law professor who specializes in the law, history, and politics of reproduction, health care, and conservatism. She said Sheehy’s argument reprises a Republican talking point that abortion opponents have made for decades.

Similar arguments are being heard nationwide as 10 states consider ballot measures to constitutionally protect abortion this election cycle.

Republicans such as Sheehy are accusing Democrats of being extreme on abortion partly to steer the discussion away from their own uncertain position, Ziegler said. The anti-abortion bloc is a key part of the GOP base, but since the Dobbs ruling, voters in seven states, including Montana, have added or upheld abortion rights in elections.

“They can’t really disavow what pro-life groups want as extreme because many of their base voters would be horrified by that,” Ziegler said. “But they can’t embrace it because then many swing voters would be horrified by that.”

Kimport said Sheehy’s statement “reveals a blatant misunderstanding of pregnancy care.”

“What people don’t understand about third-trimester abortions is that there aren’t very many, but for the people who do need abortions later in pregnancy, the circumstances are often desperate and intense,” she said. “And these are the people who are being maligned in these political conversations.”

Our Ruling

Sheehy’s description of Tester’s “extreme” position that would allow abortion “up until the moment of birth” simply doesn’t hold up.

These statements are rooted in Tester’s support for the Women’s Health Protection Act. That bill, however, doesn’t open the door to abortion on demand later in pregnancy. Instead, it allows for the role of medical judgment. In addition, CDC data indicates that late-term pregnancies are rare. Also, the term “elective abortion” is a political rather than medical phrasing.

We rate this claim False.

sources:NBC Montana, “WATCH: Incumbent U.S. Senator Tester debates challenger Tim Sheehy,” July 9, 2024

X social platform, post by @SheehyforMT, June 9, 2024

Tim Sheehy’s U.S. Senate campaign website, accessed June 9, 2024

Email interview with Katie Martin, Tim Sheehy’s spokesperson, June 11, 2024

Susan B. Anthony Pro-Life America, “SBA Pro-Life America’s Candidate Fund Endorses Tim Sheehy for U.S. Senate,” Jan. 30, 2024

Marjorie Dannenfelser, president of SBA Pro-Life America, in a statement, June 26, 2024

Email interview with Alina Salganicoff, KFF senior vice president and director of the nonprofit’s Women’s Health Policy Program, June 12, 2024

Phone interview with Katrina Kimport, University of California-San Francisco professor, June 12, 2024

Phone interview with Mary Ziegler, University of California-San Diego professor, June 12, 2024

Email interview with Rachel Kingery, American College of Obstetricians and Gynecologists spokesperson, June 12, 2024

KFF, “Status of Abortion-Related State Constitutional Amendment Measures for the 2024 Election,” updated June 28, 2024

KFF, ”Abortions Later in Pregnancy in a Post-Dobbs Era,” Feb. 21, 2024

Julie Rovner, KFF Health News, “Abortion ‘Until the Day of Birth’ Is Almost Never a Thing,” Nov. 15, 2023

American College of Obstetricians and Gynecologists, “ACOG Guide to Language and Abortion,” accessed June 11, 2024

American College of Obstetricians and Gynecologists, “Facts Are Important: Understanding and Navigating Viability,” accessed June 11, 2024

American College of Obstetricians and Gynecologists, “Facts Are Important: Gestational Development and Capacity for Pain,” accessed June 11, 2024

Charlotte Lozier Institute, Fact Sheet: “Abortions at 15 Weeks in the United States,” updated Jan. 12, 2023

PolitiFact, “Ron DeSantis’ False Claim That Some States Allow ‘Post-Birth Abortions. None Do,” July 21, 2023

Women’s Health Protection Act of 2021, accessed June 11, 2024

Women’s Health Protection Act of 2022, accessed June 11, 2024

Women’s Health Protection Act of 2023, accessed July 2, 2024

Born-Alive Infants Protection Act of 2002, accessed June 11, 2024

Born-Alive Abortion Survivors Act of 2022, accessed June 11, 2024

Montana Free Press, “How Montana’s LR-131 ‘Born Alive’ Referendum Failed,” Nov. 15, 2022

Ballotpedia, “History of Abortion Ballot Measures,” accessed June 13, 2024

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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In 2013, the FDA approved an implantable device to treat leaky heart valves. Among its inventors was Mehmet Oz, the former television personality and former U.S. Senate candidate widely known as “Dr. Oz.”

In online videos, Oz has called the process that brought the MitraClip device to market an example of American medicine firing “on all cylinders,” and he has compared it to “landing a man on the moon.”

MitraClip was designed to spare patients from open-heart surgery by snaking hardware into the heart through a major vein. Its manufacturer, Abbott, said it offered new hope for people severely ill with a condition called mitral regurgitation and too frail to undergo surgery.

“It changed the face of cardiac medicine,” Oz said in a video.

But since MitraClip won FDA approval, versions of the device have been the subject of thousands of reports to the agency about malfunctions or patient injuries, as well as more than 1,100 reports of patient deaths, FDA records show. Products in the MitraClip line have been the subject of three recalls. A former employee has alleged in a federal lawsuit that Abbott promoted the device through illegal inducements to doctors and hospitals. The case is pending, and Abbott has denied illegally marketing the device.

The MitraClip story is, in many ways, a cautionary tale about the science, business, and regulation of medical devices.

Manufacturer-sponsored research on the device has long been questioned. In 2013, an outside adviser to the FDA compared some of the data marshaled in support of its approval to “poop.”

The FDA expanded its approval of MitraClip to a wider set of patients in 2019, based on a clinical trial in which Abbott was deeply involved and despite conflicting findings from another study.

In the three recalls, the first of which warned of potentially deadly consequences, neither the manufacturer nor the FDA withdrew inventory from the market. The company told doctors it was OK for them to continue using the recalled products.

In response to questions for this article, both Abbott and the FDA described MitraClip as safe and effective.

“With MitraClip, we’re addressing the needs of people with MR who often have no other options,” Abbott spokesperson Brent Tippen said. “Patients suffering from mitral regurgitation have severely limited quality of life. MitraClip can significantly improve survival, freedom for hospitalization and quality of life via a minimally invasive, now common procedure.”

An FDA spokesperson, Audra Harrison, said patient safety “is the FDA’s highest priority and at the forefront of our work in medical device regulation.”

She said reports to the FDA about malfunctions, injuries, and deaths that the device may have caused or contributed to are “consistent” with study results the FDA reviewed for its 2013 and 2019 approvals.

In other words: They were expected.

Inspiration in Italy

When a person has mitral regurgitation, blood flows backward through the mitral valve. Severe cases can lead to heart failure.

With MitraClip, flaps of the valve — known as “leaflets” — are clipped together at one or more points to achieve a tighter seal when they close. The clips are deployed via a catheter threaded through a major vein, typically from an incision in the groin. The procedure offers an alternative to connecting the patient to a heart-lung machine and repairing or replacing the mitral valve in open-heart surgery.

Oz has said in online videos that he got the idea after hearing a doctor describe a surgical technique for the mitral valve at a conference in Italy. “And on the way home that night, on a plane heading back to Columbia University, where I was on the faculty, I wrote the patent,” he told KFF Health News.

A patent obtained by Columbia in 2001, one of several associated with MitraClip, lists Oz first among the inventors.

But a Silicon Valley-based startup, Evalve, would develop the device. Evalve was later acquired by Abbott for about $400 million.

“I think the engineers and people at Evalve always cringe a little bit when they see Mehmet taking a lot of, you know, basically claiming responsibility for what was a really extraordinary team effort, and he was a small to almost no player in that team,” one of the company’s founders, cardiologist Fred St. Goar, told KFF Health News.

As of 2019, the MitraClip device cost $30,000 per procedure, according to an article in a medical journal. According to the Abbott website, more than 200,000 people around the world have been treated with MitraClip.

Oz filed a financial disclosure during his unsuccessful run for the U.S. Senate in 2022 that showed him receiving hundreds of thousands of dollars in annual MitraClip royalties.

Abbott recently received FDA approval for TriClip, a variation of the MitraClip system for the heart’s tricuspid valve.

Endorsed ‘With Trepidation’

Before the FDA said yes to MitraClip in 2013, agency staffers pushed back.

Abbott had originally wanted the device approved for “patients with significant mitral regurgitation,” a relatively broad term. After the FDA objected, the company narrowed its proposal to patients at too-high risk for open-heart surgery.

Even then, in an analysis, the FDA identified “fundamental” flaws in Abbott’s data.

One example: The data compared MitraClip patients with patients who underwent open-heart surgery for valve repair — but the comparison might have been biased by differences in the expertise of doctors treating the two groups, the FDA analysis said. While MitraClip was implanted by a highly select, experienced group of interventional cardiologists, many of the doctors doing the open-heart surgeries had performed only a “very low volume” of such operations.

FDA “approval is not appropriate at this time as major questions of safety and effectiveness, as well as the overall benefit-risk profile for this device, remain unanswered,” the FDA said in a review prepared for a March 2013 meeting of a committee of outside advisers to the agency.

Some committee members expressed misgivings. “If your right shoe goes into horse poop and your left shoe goes into dog poop, it’s still poop,” cardiothoracic surgeon Craig Selzman said, according to a transcript.

The committee voted 5-4 against MitraClip on the question of whether it proved effective. But members voted 8-0 that they considered the device safe and 5-3 that the benefits of the device outweighed its risks.

Selzman voted yes on the last question “with trepidation,” he said at the time.

In October 2013, the FDA approved the MitraClip Clip Delivery System for a narrower group of patients: those with a particular type of mitral regurgitation who were considered a surgery risk.

“The reality is, there is no perfect procedure,” said Jason Rogers, an interventional cardiologist and University of California-Davis professor who is an Abbott consultant. The company referred KFF Health News to Rogers as an authority on MitraClip. He called MitraClip “extremely safe” and said some patients treated with it are “on death’s door to begin with.”

“At least you’re trying to do something for them,” he said.

Conflicting Studies

In 2019, the FDA expanded its approval of MitraClip to a wider set of patients.

The agency based that decision on a clinical trial in the United States and Canada that Abbott not only sponsored but also helped design and manage. It participated in site selection and data analysis, according to a September 2018 New England Journal of Medicine paper reporting the trial results. Some of the authors received consulting fees from Abbott, the paper disclosed.

A separate study in France reached a different conclusion. It found that, for some patients who fit the expanded profile, the device did not significantly reduce deaths or hospitalizations for heart failure over a year.

The French study, which appeared in the New England Journal of Medicine in August 2018, was funded by the government of France and Abbott. As with the North American study, some of the researchers disclosed they had received money from Abbott. However, the write-up in the journal said Abbott played no role in the design of the French trial, the selection of sites, or in data analysis.

Gregg Stone, one of the leaders of the North American study, said there were differences between patients enrolled in the two studies and how they were medicated. In addition, outcomes were better in the North American study in part because doctors in the U.S. and Canada had more MitraClip experience than their counterparts in France, Stone said.

Stone, a clinical trial specialist with a background in interventional cardiology, acknowledged skepticism toward studies sponsored by manufacturers.

“There are some people who say, ‘Oh, well, you know, these results may have been manipulated,'” he said. “But I can guarantee you that’s not the truth.”

‘Nationwide Scheme’

A former Abbott employee alleges in a lawsuit that after MitraClip won approval, the company promoted the device to doctors and hospitals using inducements such as free marketing support, the chance to participate in Abbott clinical trials, and payments for participating in “sham speaker programs.”

The former employee alleges that she was instructed to tell referring physicians that if they observed mitral regurgitation in their patients to “just send it” for a MitraClip procedure because “everything can be clipped.” She also alleges that, using a script, she was told to promote the device to hospital administrators based on financial advantages such as “growth opportunities through profitable procedures, ancillary tests, and referral streams.”

The inducements were part of a “nationwide scheme” of illegal kickbacks that defrauded government health insurance programs including Medicare and Medicaid, the lawsuit claims.

The company denied doing anything illegal and said in a court filing that “to help its groundbreaking therapy reach patients, Abbott needed to educate cardiologists and other healthcare providers.”

Those efforts are “not only routine, they are laudable — as physicians cannot use, or refer a patient to another doctor who can use, a device that they do not understand or in some cases even know about,” the company said in the filing.

Under federal law, the person who filed the suit can receive a share of any money the government recoups from Abbott. The suit was filed by a company associated with a former employee in Abbott’s Structural Heart Division, Lisa Knott. An attorney for the company declined to comment and said Knott had no comment.

Reports to the FDA

As doctors started using MitraClip, the FDA began receiving reports about malfunctions and cases in which the product might have caused or contributed to a death or an injury.

According to some reports, clips detached from valve flaps. Flaps became damaged. Procedures were aborted. Mitral leakage worsened. Doctors struggled to control the device. Clips became “entangled in chordae” — cord-like structures also known as heartstrings that connect the valve flaps to the heart muscle. Patients treated with MitraClip underwent corrective operations.

As of March 2024, the FDA had received more than 17,000 reports documenting more than 22,000 “events” involving mitral valve repair devices, FDA data shows. All but about 200 of those reports mention one iteration of MitraClip or another, a KFF Health News review of FDA data found.

Almost all the reports came from Abbott. The FDA requires manufacturers to submit reports when they learn of mishaps potentially related to their devices.

The reports are not proof that devices caused problems, and the same event might be reported multiple times. Other events may go unreported.

Despite the reports’ limitations, the FDA provides an analysis of them for the public on its website.

MitraClip’s risks weren’t a surprise.

Like the rapid-fire fine print in television ads for prescription drugs, the original product label for the device listed more than 60 types of potential complications.

Indeed, during clinical research on the device, about 6% of patients implanted with MitraClip died within 30 days, according to the label. Almost 1 in 4 — 23.6% – were dead within a year.

The FDA spokesperson, Harrison, pointed to a study originally published in 2021 in The Annals of Thoracic Surgery, based on a central registry of mitral valve procedures, that found lower rates of death after MitraClip went on the market.

“These data confirmed that the MitraClip device remains safe and effective in the real-world setting,” Harrison said.

But the study’s authors, several of whom disclosed financial or other connections to Abbott, said data was missing for more than a quarter of patients one year after the procedure.

A major measure of success would be the proportion of MitraClip patients who are alive “with an acceptable quality of life” a year after undergoing the procedure, the study said. Because such information was available for fewer than half of the living patients, “we have omitted those outcomes from this report,” the authors wrote.

If you’ve had an experience with MitraClip or another medical device and would like to tell KFF Health News about it, click here to share your story with us.

KFF Health News audience engagement producer Tarena Lofton contributed to this report.

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David Engler had been pretty sure he didn’t want children. Then a frustrating school day two years ago helped seal the deal for the now 43-year-old substitute teacher.

“It was wild. I had to call the office seven times to get kids pulled out,” he said. “The next day, I called Kaiser and said, ‘I’d like to know how much a vasectomy is.’”

A representative with Engler’s insurer, Kaiser Permanente, told him the procedure would be free because it was a form of birth control, he said. But after undergoing the vasectomy last winter, he received a bill for $1,080.

“I felt defeated, tricked, and frustrated,” said Engler, who lives in Portland, Oregon.

Engler’s experience highlights how a labyrinthine patchwork of insurance coverage rules on reproductive health care creates confusion for patients. Oregon requires that vasectomies be covered for most people who work in the public sector. But the federal Affordable Care Act — which mandates that most health plans cover preventive health services, such as contraception, at no cost to the consumer — does not require vasectomies to be covered.

And that perplexity surrounding coverage may get more complicated.

An ongoing federal lawsuit aims to strike down the ACA’s preventive care coverage requirements for private insurers. If the case knocks out the mandates, state-level laws — which vary widely across the country — would carry more weight, a change that would resume the “wild West” dynamic from before Obamacare, said Zachary Baron, a health policy researcher at Georgetown Law.

It would create an environment “in which insurers and employers pick and choose which services they want to cover or which services they want to charge for,” Baron said. “It would certainly threaten access to care for millions of Americans.”

Studies have shown the requirements to cover preventive care have reduced consumers’ out-of-pocket costs and increased their use of short- and long-term birth control methods.

The job of defining which contraceptive services should be covered falls to the Health Resources and Services Administration, or HRSA. Two other groups — the U.S. Preventive Services Task Force, or USPSTF, and the Advisory Committee on Immunization Practices, or ACIP — make recommendations on other kinds of care that the ACA requires insurers to cover.

The plaintiffs in the lawsuit, a group of individuals and Christian-owned businesses, argue the members of these three panels haven’t been properly appointed by Congress. They also say the recommendations for insurance plans to cover medication for HIV prevention violate their religious rights.

On June 21, the U.S. Court of Appeals for the 5th Circuit issued what it called a “mixed bag” opinion in the case. It said one group — the USPSTF — had not been properly appointed, and therefore its recommendations made after the ACA was signed into law were unconstitutional. The plaintiffs had asked for a nationwide ruling, but the court said only the plaintiffs’ organizations could be exempted from its recommendations.

The court then sent the plaintiffs’ challenges to the recommendations made by HRSA and ACIP — including those on contraception — back to a lower court to consider.

The case is likely headed to Reed O’Connor, a federal judge in Texas who has issued decisions undermining the ACA — including a ruling striking down the entire law that the U.S. Supreme Court later overturned.

“O’Connor is a judge notoriously hostile to the Affordable Care Act,” said Gretchen Borchelt, vice president of reproductive rights and health at the National Women’s Law Center. “He is someone who is willing to impose remedies where he takes access to care away from everybody in the country based on what’s happening in one situation.”

A win for the plaintiffs, she worried, could create confusion about what kind of contraception is covered and how much it costs, which would ultimately lead to more unintended pregnancies — all at a time when women have less access to abortions.

Nearly two dozen organizations — including the American Medical Association, the American Public Health Association, and the Blue Cross Blue Shield Association — have joined Borchelt’s group in filing briefs warning about the potential disruptions a ruling for the plaintiffs could cause.

Jay Carson, an attorney with the Buckeye Institute, a conservative think tank, said he’s happy with the court’s ruling. His group, along with the state of Texas, filed briefs in support of the plaintiffs.

“Unelected bureaucrats” shouldn’t have the power to decide what insurance plans should be required to cover, said Carson. “We’ve gotten so far afield of Congress actually making the laws and, instead, relying on Congress to just empower some agency to do the heavy lifting.”

What power agencies do have is likely to be curtailed in the wake of a June 28 U.S. Supreme Court decision that overturned a decades-old precedent dictating that courts should defer to federal agencies when it comes to regulatory or scientific decisions.

“Courts are going to be more able to scrutinize experts,” said Richard Hughes, a health care regulatory attorney with the firm Epstein, Becker, and Green. “It’s a vibe shift — we’re moving in the direction of the administrative state being curtailed.”

Eliminating federal coverage requirements for contraception would leave it up to states to determine what services health insurance plans would be required to provide.

Fourteen states and Washington, D.C., currently protect the right to contraception. But states can go only so far with those rules, said Baron, because a federal statute prevents them from regulating self-funded health plans, which cover about 65% of workers.

“It would leave significant gaps in coverage,” Baron said.

A group of Democratic-led states made such an argument in a court brief last year, arguing for the mandates to be upheld to discourage self-funded plans from declining to offer preventive services, as they often did before the ACA.

Even when states can regulate what health plans cover, people still fall through the cracks. “I see denials all the time in instances where the treatment clearly is covered,” said Megan Glor, a health insurance attorney in Oregon.

Patients can appeal their insurers’ decisions, but that’s not easy. And if a patient’s appeals fail, litigation is generally the only option — but that’s a long, complicated, costly process, Glor said. Likely, the best outcome for a patient is an insurer covering what should have been covered in the first place.

When Engler called Kaiser Permanente about his vasectomy charge, he said a representative told him the bill was sent by mistake. Still, he said, the insurer kept asking for money. Engler filed and lost multiple appeals and eventually settled the charge for $540.

Engler’s vasectomy likely should have been free, Glor said. As a teacher, Engler is a public sector employee, which means his insurance would be subject to an Oregon law that mandates no-cost coverage for vasectomies.

Kaiser Permanente told KFF Health News that state law does not apply because of a federal rule for high-deductible health plans paired with health savings accounts. That rule requires patients to cover out-of-pocket costs until their deductible is met.

However, after KFF Health News contacted Kaiser Permanente about Engler’s situation, he said the company promised to issue a full refund for the $540 he had paid to settle his case.

“Although we administered the benefit correctly, an employee who spoke with Mr. Engler told him incorrectly that he would not have” to share the cost, said Debbie Karman, a Kaiser Permanente spokesperson.

Engler said he’s happy with the outcome, though he’s still unsure how Kaiser Permanente’s staff was confused about his insurance coverage.

He worries that others don’t have the means he had to advocate for himself.

“It’s scary,” he said. “So many people are limited in their resources or their understanding of how to fight — or even who to fight.”

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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Planned Parenthood está preparando una campaña millonaria con el objetivo de desalojar de sus bancas a los congresistas republicanos de California.

Esta ofensiva estratégica es parte de un esfuerzo nacional más amplio del grupo de derechos reproductivos, que se propone evitar que una mayoría republicana apruebe restricciones al derecho al aborto, incluida una prohibición nacional.

Planned Parenthood Affiliates of California ha puesto la mira en ocho distritos en los que los votantes apoyaron mayoritariamente a los republicanos en 2022, aunque antes habían respaldado una enmienda constitucional que consagraba el acceso al aborto y a los anticonceptivos.

La estrategia publicitaria adoptó un enfoque negativo porque se centra en los antecedentes de cada uno de los congresistas que votaron contra el acceso al aborto y a métodos anticonceptivos en general.

En campañas anteriores, el grupo usó la idea del “Burn Book” de la comedia de 2004 “Mean Girls”, donde las protagonistas escribían rumores sobre sus compañeros de escuela.

Oficiales del Partido Republicano respondieron que confiaban en que los votantes de esos distritos considerarían el panorama general y mantendrían a los republicanos en sus bancas. Y uno de los candidatos rechazó la imputación de que el acceso a la atención reproductiva estuviera amenazado en el estado.

“El acceso al aborto y a otros servicios de salud reproductiva no van a desaparecer en California”, dijo Calvin Moore, vocero del congresista republicano Ken Calvert, del condado de Riverside. “El congresista Calvert cree que se trata de una cuestión profundamente personal que debe dejarse a criterio de los estados y se opone a una prohibición nacional del aborto”.

Con 52 escaños, la liberal California podría jugar un papel crucial en el control de la Cámara de Representantes de Estados Unidos este otoño.

Pero Planned Parenthood tiene mucho trabajo por delante, ya que siete de los escaños a los que aspira están ocupados actualmente por republicanos y sólo uno —el que dejará vacante la demócrata Katie Porter tras su fallida candidatura al Senado— quedará libre.

Según The Cook Political Report, cuatro de las contiendas electorales serán muy reñidas. El distrito de la representante Michelle Steel, ubicado principalmente en el condado de Orange, se inclina por los republicanos. Además, tienen buenas probabilidades de ganar tanto Kevin Kiley, cuyo distrito está situado a lo largo de la frontera oriental de California, como Young Kim, que representa al que está ubicado al este de Anaheim.

Para muchos votantes, el aborto ha resultado ser un tema más importante de lo que los analistas políticos habían previsto inicialmente. “Creo que en muchos de estos lugares los votantes se preocupan por sus libertades reproductivas y se identifican con nuestro mensaje, esa es la razón por la que creemos que vamos a ganar”, afirmó Jodi Hicks, directora ejecutiva y presidenta de Planned Parenthood Affiliates of California.

Aunque Planned Parenthood centró su trabajo en las elecciones a la Cámara de Representantes, Hicks mencionó que también están atentos a lo que sucede en los estados vecinos. Una filial de California, Planned Parenthood Mar Monte, se extiende hasta Reno, Nevada, y su equipo de defensa ha estado apoyando activamente una iniciativa electoral que protegería constitucionalmente el derecho al aborto de la población del estado.

En el nivel nacional, el grupo planea gastar $40 millones en por lo menos ocho estados: Arizona, Georgia, Montana, New Hampshire, Nueva York, Carolina del Norte, Pennsylvania y Wisconsin.

En California, Planned Parenthood pretende poner de relieve los antecedentes de congresistas como Kiley, que votó a favor de imponer penas de prisión a los médicos que practicaran abortos.

Calvert, Kim, Steel y los representantes Mike García, del norte del condado de Los Ángeles, y David Valadao, del Valle Central, votaron en contra del acceso a los anticonceptivos. Y García, Valadao y Steel patrocinaron juntos un proyecto de ley para prohibir efectivamente los abortos en todo el país.

James Gallagher, líder republicano de la Asamblea, que forma parte de la junta del Partido Republicano de California, dijo que muchos californianos no confían en que los demócratas protejan sus derechos de salud, incluso si los líderes políticos apoyan que el aborto sea legal.

Gallagher señaló que bajo el mandato de los demócratas cerraron salas de maternidad y hospitales se han declarado en quiebra.

“En estos momentos, los demócratas no tienen un gran historial en California en lo que respecta a la atención médica de las mujeres”, afirma Gallagher. “Así que creo que suenan muy poco creíbles”.

Según una encuesta de KFF realizada en febrero sobre el aborto como una cuestión que incida en las elecciones de este año, cerca de la mitad de los votantes republicanos que apoyan que la interrupción del embarazo sea legal confían más en su propio partido sobre el tema, mientras que el 8% cree más en el Partido Demócrata. Uno de cada tres dijo que no confía en ninguno de los dos partidos políticos respecto de esta cuestión.

Ivy Cargile, profesora asociada de Ciencias Políticas en la Universidad Estatal de California en Bakersfield, consideró que puede ser difícil movilizar a los votantes sobre este tema, ya que muchos californianos consideran que sus derechos reproductivos se encuentran protegidos en este estado tan azul. “Los votantes podrían pensar que California es tan progresista que los derechos reproductivos están a salvo”, dijo Cargile. “Pero la ley federal prevalece sobre la estatal”.

Planned Parenthood intentará convencer a los votantes del Valle Central y del sur de California de que si permanecen leales a los candidatos republicanos corren el riesgo de que se prohíba el aborto en todo el país.

Planned Parenthood convencerá a los votantes del Valle Central y del Sur de California de que permaneciendo leal a los republicanos se corre el riesgo de una prohibición nacional del aborto.

Gran parte de su campaña publicitaria se centrará en conectar puntos para los votantes, argumentando que el apoyo a los derechos reproductivos requiere votar por candidatos demócratas.

“California es fundamental para garantizar que ganemos a nivel nacional”, explicó Hicks.

Gallagher dijo que la posición del Partido Republicano respecto de la inflación y de la seguridad pública tendrá impacto entre los votantes de los distritos más conservadores de California.

Tanto él como Calvert predicen que las elecciones reflejarán lo que sucedió en 2022: aunque los electores respaldaron la enmienda constitucional que garantiza la vigencia de los derechos reproductivos, apoyaron a los republicanos que estaban buscando la reelección, incluso a aquellos que se pronunciaron en contra del aborto.

KFF Health News habló con seis votantes en el distrito de García que dicen que apoyan el acceso al aborto, pero que normalmente votan por candidatos republicanos. Los seis planeaban votar por la reelección de García.

Rose Large, de Santa Clarita, dijo que si bien apoya el derecho al aborto, tiene preocupaciones más profundas con el liderazgo del Partido Demócrata en temas como la economía y el control fronterizo. Otros mencionaron el temor al aumento de la delincuencia y el deseo de proteger los derechos de la Segunda Enmienda.

Cuando se le preguntó si creía que la campaña de Planned Parenthood podría influir en ella o en los votantes de su vecindario, Large respondió: “Personalmente, no. No”.

Esta historia fue producida por KFF Health News, que publica California Healthline, un servicio editorialmente independiente de la California Health Care Foundation.

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

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More than a dozen states are weighing abortion-related ballot measures to be decided this fall, most of which would protect abortion rights if passed. KFF Health News’ Julie Rovner and Rachana Pradhan explain what’s at stake in the 2024 election, both at the national and state levels.

Find more of our abortion coverage here.

CreditsHannah NormanVideo producer & animatorOona TempestArt director & illustratorKFF 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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Planned Parenthood is preparing a seven-figure campaign blitz to oust GOP incumbents from California congressional seats, part of a larger national effort by the reproductive rights group to prevent a Republican majority from passing abortion restrictions, including a national ban.

Planned Parenthood Affiliates of California is targeting eight districts where voters largely backed Republicans in 2022 even as they endorsed a constitutional amendment enshrining access to abortion and contraceptives. The advertising plan goes negative by focusing on each incumbent’s record of voting against access to abortion and contraceptives. In the past, the group riffed on the “Burn Book” from the 2004 comedy “Mean Girls.”

GOP party officials said they were confident voters in those districts would look at the bigger picture and return Republicans to office. And one incumbent dismissed the notion that there’s a threat to reproductive care in the Golden State.

“Access to abortion and other reproductive care aren’t going anywhere in California,” said Calvin Moore, a spokesperson for Rep. Ken Calvert of Riverside County. “Congressman Calvert believes this is a deeply personal issue that should be left up to the states and opposes a national abortion ban.”

With 52 seats, liberal California could tip the scales for control of the U.S. House this fall. But Planned Parenthood has its work cut out for it since seven of the seats it is targeting are currently held by Republicans and only one — to be vacated by Democrat Katie Porter after an unsuccessful bid for U.S. Senate — is open.

According to The Cook Political Report, four are toss-up races; Rep. Michelle Steel’s district, mostly in Orange County, leans Republican; and Reps. Kevin Kiley, who represents a district along California’s eastern border, and Young Kim, who represents a district east of Anaheim, are likely to win.

Abortion has proved to be a bigger issue for many voters than political analysts may have anticipated. “In many of these seats, I think voters care about their reproductive freedoms and they resonate with our message, so we think we’re going to win,” said Jodi Hicks, CEO and president of Planned Parenthood Affiliates of California.

While Planned Parenthood is focused on House races, Hicks said it is also monitoring neighboring states. One California branch, Planned Parenthood Mar Monte, stretches into Reno, Nevada, and its advocacy arm has been actively supporting a Nevada ballot initiative that would constitutionally protect Nevadans’ right to abortion.

Nationally, the group plans to spend $40 million in at least eight states: Arizona, Georgia, Montana, New Hampshire, New York, North Carolina, Pennsylvania, and Wisconsin.

In California, Planned Parenthood aims to highlight the record of members of Congress like Kiley, who voted to potentially impose prison sentences on doctors who provide abortions. Calvert, Kim, Steel, and Reps. Mike Garcia, of northern Los Angeles County, and David Valadao, of the Central Valley, voted against access to birth control. And Garcia, Valadao, and Steel co-sponsored a bill to effectively ban abortions nationwide.

Assembly Republican leader James Gallagher, who is on the California Republican Party board, said many Californians don’t trust Democrats to protect their health care rights even if political leaders support abortion being legal, pointing out that under Democrats maternity wards have closed and hospitals have filed for bankruptcy.

“Democrats don’t really have a great record in California right now on women’s health care issues,” Gallagher said. “So I think it just rings a little bit hollow.”

According to a February KFF poll on abortion as a 2024 election issue, about half of Republican voters who support it being legal trust their own party more on the issue, while 8% trust the Democratic Party more. One in three said they don’t trust either political party on the issue.

Ivy Cargile, an associate professor of political science at California State University-Bakersfield, said it may be tricky to galvanize voters on the issue since many Californians are confident their reproductive rights are protected in the deep-blue state. “Voters might be thinking that California is so progressive, so reproductive rights are safe,” Cargile said. “But federal law does trump state law.”

Planned Parenthood will impress upon Central Valley and Southern California voters that remaining loyal to Republicans risks a national abortion ban. A large part of its advertising campaign will focus on connecting the dots for voters, arguing support for reproductive rights requires voting for Democratic candidates.

“California is so pivotal to ensure that we’re winning at the national level,” Hicks said.

Gallagher said the GOP’s focus on inflation and public safety will resonate with voters in California’s more conservative districts. He and Calvert predict the races will mirror what happened in 2022: Though voters backed the constitutional amendment for reproductive rights, they supported incumbent Republicans, even those who were anti-abortion.

California Healthline spoke to six voters in Garcia’s district who say they support access to abortion but typically vote for Republican candidates. All six planned to vote for Garcia’s reelection.

Rose Large of Santa Clarita said that while she supports abortion rights, she has deeper concerns with Democratic Party leadership on issues such as the economy and border control. Others mentioned fears of rising crime and wanting to protect Second Amendment rights.

Asked if she believed Planned Parenthood’s campaign would sway her or voters in her neighborhood, Large replied, “Personally, I don’t. No.”

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

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

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It’s been two years since the U.S. Supreme Court overturned the constitutional right to an abortion, triggering a parade of restrictions and bans in conservative-led states. But the impact of those restrictions has 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.

According to 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 for residency positions this year in states with abortion bans and other significant abortion restrictions.

In this episode of “The Indicator From Planet Money,” KFF Health News’ chief Washington correspondent, Julie Rovner, reports on how the medical labor force is changing post-Roe v. Wade and why graduating medical students, from OB-GYNs to pediatricians, are avoiding training in states with abortion bans.

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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Cientos de estadounidenses pueden haber recibido terapia, sin saberlo, de una impostora sin formación que se hizo pasar por terapeuta en sesiones por internet, posiblemente durante dos años. El engaño sólo se descubrió cuando murió, según registros de departamentos de salud estatales.

Peggy A. Randolph, trabajadora social con licencia en Florida y Tennessee, quien trabajaba para Brightside Health, una empresa nacional de terapia en línea, está acusada de ayudar a su esposa a hacerse pasar por ella en sesiones de internet, según el informe de una investigación del Departamento de Salud de Florida.

El informe de Florida indica que la pareja “estafaba” a los pacientes mediante un “esfuerzo coordinado”: mientras Randolph trataba a pacientes en persona, su esposa se hacía pasar por ella en sesiones de telesalud con pacientes de Brightside. El engaño se descubrió después que la esposa impostora muriera el año pasado, y un paciente se diera cuenta de que había estado hablando con la persona equivocada, según un acuerdo de conciliación del Departamento de Salud de Tennessee.

Los registros de ambos estados identifican a la esposa de Randolph sólo por sus iniciales, T.R., pero su nombre completo figura en su obituario: Tammy G. Heath-Randolph. Tradicionalmente, se espera que los terapeutas tengan al menos una maestría, pero la esposa de Randolph “no tenía licencia ni formación para prestar ningún tipo de servicios de consejería”, según revela el acuerdo de Tennessee.

Según consta en el acuerdo: “[Randolph] niega saber que T.R. estuviera utilizando sus credenciales de acceso al portal de terapeutas de Brightside Health o tratando a clientes con su cuenta. Sin embargo, [ella] recibió compensación por las sesiones realizadas”.

La presunta artimaña no había sido denunciada anteriormente y sus detalles y alcance salieron a la luz recientemente en las páginas de unos documentos públicos divulgadas por los agencias estatales.

El acuerdo de Tennessee, publicado en mayo, indica que Randolph debió haber proporcionado terapia en línea a “cientos de clientes” mientras trabajaba para Brightside Health desde enero de 2021 hasta febrero de 2023. Sin embargo, una investigación interna de Brightside descubrió que en realidad era Heath-Randolph quien “veía a todos los pacientes y lo estuvo haciendo durante mucho tiempo”, según el informe de la investigación de Florida.

Randolph declinó hacer comentarios.

Los registros de Florida y Tennessee dicen que Randolph renunció voluntariamente a sus licencias de trabajadora social en ambos estados. Esto dio lugar a que los departamentos de salud abandonaran sus investigaciones, lo que limitó los detalles del caso y los documentos disponibles en el registro público.

El informe de la investigación interna de Brightside no se ha divulgado.

Brightside Health, una empresa de San Francisco que ofrece sesiones de psiquiatría y terapia en línea en todo el país, declinó hacer ningún tipo de declaración por medio de una entrevista.

La vocera de la empresa, Hannah Changi, dijo en un correo electrónico que en cuanto Brightside se enteró de las acusaciones, hizo una auditoría de su seguridad, despidió a Randolph y la denunció ante las autoridades estatales que concede las licencias. Changi señaló que Brightside no puede decir cuántos pacientes fueron atendidos por la esposa de Randolph “debido a la naturaleza del incidente y los procedimientos legales en curso”, pero aseguró que la compañía notificó y reembolsó a todos los “pacientes potencialmente afectados”.

“Nos tomamos muy en serio la experiencia de nuestros pacientes y tenemos un elevado código ético de conducta”, dijo Changi. “Nos decepciona profundamente que uno de nuestros proveedores haya traicionado la confianza que Brightside y, más importante, sus pacientes habían depositado en ella”.

Además, Brightside se vio obligada a alertar al Departamento de Salud y Servicios Humanos de Estados Unidos, que investiga la filtración de datos que exponen información médica privada. En esta filtración, un “individuo no autorizado” accedió a la información de 767 personas, incluidos números de seguro social y diagnósticos, según la base de datos en línea de la agencia.

Ni las autoridades de salud de Florida ni las de Tennessee respondieron a las preguntas sobre el caso.

Dean Flener, vocero del Departamento de Salud de Tennessee, dijo que los detalles del caso de Randolph siguen siendo confidenciales en virtud de la ley estatal.

Jae Williams, vocero del Departamento de Salud de Florida, señaló que no se llevó a cabo una investigación completa porque Randolph renunció a su licencia, lo que tiene el mismo efecto que la revocación por parte del estado, pero le permitió conservar “la dignidad que le quedaba”.

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 HostJulie RovnerKFF 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.It was a busy year for health-related cases at the Supreme Court. Among other issues, the justices grappled with two abortion cases, a separate case touching on the opioid epidemic, and a case challenging whether localities can bar homeless people from sleeping in public spaces. Also, the court struck down a decades-old precedent that could dramatically change how the federal government oversees health care and other types of policy.

In this special episode of “What the Health?”, Sarah Somers, legal director of the National Health Law Program, joins KFF Health News’ chief Washington correspondent, Julie Rovner, to discuss how the justices disposed of the term’s health-related cases and what those decisions could mean going forward.

*A Summary of the Cases*

On the functioning of government:

Loper Bright Enterprises v. Raimondo, challenging the “Chevron doctrine” that required courts to defer in most cases to the expertise of federal agencies in interpreting laws passed by Congress.

Corner Post Inc. v. Board of Governors of the Federal Reserve System, challenging the statute of limitations for bringing a case against a federal agency’s actions.

On abortion:

Food and Drug Administration v. Alliance for Hippocratic Medicine, challenging the FDA’s approval of the abortion pill mifepristone.

Moyle v. United States and Idaho v. United States, about whether the federal Emergency Medical Treatment and Active Labor Act requirement that hospitals participating in Medicare provide the care needed to stabilize a patient’s condition overrides Idaho’s near-complete abortion ban when a pregnant patient experiences a medical emergency.

On other health issues:

Harrington v. Purdue Pharma, about whether federal bankruptcy law can shield an entity from future claims without the consent of all claimants.

City of Grants Pass v. Johnson, about whether banning sleeping in public subjects those with no other place to sleep to “cruel and unusual punishment” under the U.S. Constitution.

Previous “What the Health?” coverage of these cases:

• SCOTUS Ruling Strips Power From Federal Health AgenciesJun 28, 2024
• SCOTUS Rejects Abortion Pill Challenge — For Now Jun 13, 2024
• Waiting for SCOTUSMay 30, 2024
• Abortion — Again — At the Supreme CourtApr 24, 2024
• The Supreme Court and the Abortion PillMar 28, 2024
• Health Enters the Presidential RaceJan 25, 2024
• The Supreme Court vs. the BureaucracyJan 18, 2024

click to open the transcriptTranscript: SCOTUS Term Wraps With a Bang

KFF Health News’ ‘What the Health?’Episode Title: ‘SCOTUS Term Wraps With a Bang’Episode Number: 354Published: July 3, 2024

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]

*Mila Atmos:* The future of America is in your hands. This is not a movie trailer and it’s not a political ad, but it is a call to action. I’m Mila Atmos and I’m passionate about unlocking the power of everyday citizens. On our podcast “Future Hindsight,” we take big ideas about civic life and democracy and turn them into action items for you and me. Every Thursday we talk to bold activists and civic innovators to help you understand your power and your power to change the status quo. Find us @futurehindsight.com or wherever you listen to podcasts.

*Julie Rovner:* Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Tuesday, July 2, at 11 a.m. As always, news happens fast and things might have changed by the time you hear this, so here we go.

If you’re a regular listener, you’ll remember that the week of Memorial Day we did a roundup of the health policy-related Supreme Court cases whose decisions we expected to come in June. Well, now it’s the week of July Fourth, and we’re going to follow up and talk about how those cases got resolved. We are pleased to welcome back to the podcast Sarah Somers, legal director of the National Health Law Program. Last winter, Sarah helped us understand what was at stake in perhaps the most significant health-related case of the term. Sarah, welcome back to “What the Health?”

*Sarah Somers:* Hello, Julie. Thank you so much for having me.

*Rovner: So let’s talk about the big kahuna first, or should I say the big herring? Tell us about the court’s decision in Loper Bright Enterprises v. Raimondo*. Technically, this was a case about herring fishing and who should pay for government observers on fishing boats. But the reverberations from this will be felt all over the federal government, right?

*Somers: Absolutely. This is yet another example of the kind of case that can sneak up out of nowhere for those of us who are interested in health policy, because it doesn’t have anything to do with health policy or our usual subjects. What this had to do with is a Department of Commerce regulation that required fishing boats to pay for observers to the extent to which they were fishing. And so this was something that normally would not concern us, but the parties introduced a much broader question, which is whether they should overturn a case called Chevron, which deals with the extent to which courts should defer to agency interpretations. Chevron* was decided in 1984, and what it’s meant is that if a statute is clear, then a court needs to follow the statute. But if it’s ambiguous, then the court needs to defer to a reasonable interpretation by the administrative agency.

And so this is a particularly troubling case because the regulation at issue had been withdrawn and the fishermen involved in the case had been reimbursed for any fees that they’d paid. So this wasn’t really a live issue. And it just shows the extent to which the court was really eager to get to this question. Conservative lawyers and scholars and judges have had Chevron in their sights for a good while — and have been critical of it saying that it gives agencies too much power. Now, those of us who work in health policy think it actually gives the agencies an appropriate amount of power. The agencies are the ones who have the expertise, who have the time, and who have the official function of interpreting what a statute means. In the case, the work that we do, Medicaid is the statute that we’re most interested in. Medicaid, a notoriously hypertechnical and confusing statute, and just one of hundreds that agencies are interpreting all over the federal government.

What administrative agencies do touches on the lives of every American in so many ways: environmental, transportation, health, I could go on and on, but it’s all-encompassing. Yeah, the war on Chevron has finally culminated in this final battle, and now the court has ruled that the court doesn’t have to give particular deferences to agencies anymore. They can take a fresh look at everything and say, “I don’t care what you say, accountable experts, with all of your time and your know-how, we’re going to take a look at this and see if we agree or not. And if we don’t, then it’s a whole new day.”

*Rovner:* So what kind of health issues are we most concerned about here that we would now not necessarily be giving deference to the administrative agency?

*Somers:* I was thinking about this as falling into two categories. There are sort of the high-profile, more controversial, or ideological issues. Issues like bans on discrimination and treatment for LGBTQ people; protections for discrimination for people with disabilities; regulations that ensure access to services for people with limited English proficiency; anything to do with abortion; a lot of things to do with family planning. These are the kind of things that draw controversy and are always vulnerable to challenge. But then there’s a whole ’nother world of things that people don’t really think about, which is the complexities of how rates are determined for hospitals; how rates are determined for managed-care plans; how patient billing is conducted; all the myriad regulations that govern how hospitals function. And these are the kind of things that just grind along and keep the wheels of the health care industry turning. And what this does is it throws a lot of sand in those gears and sometimes can bring things to a halt.

And so it can influence these high-profile issues where people might be more vulnerable to discrimination, not have access to services in their language. But also the kind of invisible things that you don’t see — but you just know as a patient, as a provider that the works are being gummed up and it’s not working efficiently and quickly the way it’s supposed to.

*Rovner:* I’ve seen a few people write that they’re worried about agencies getting more timid in light of this. That they might be less inclined to regulate on things that they wouldn’t normally regulate about.

*Somers:* I think that’s absolutely true. And I already think the agencies are quite cautious because they’re always vulnerable to challenge under the Administrative Procedure Act. But this is just going to turn up the heat several notches and keep them out of areas that they really are very much needed, where their expertise and their experience is needed. I think that’s absolutely true. If you want to talk about the other decision that goes hand in hand with this one then …

*Rovner:* We’ll get there in a second, but before that, I’ve also seen commentary about the concern that this will give an advantage to businesses, or basically entities that have enough money to continue to go to court. Because those are the ones who’ll be able to file and complain about regulations. Whereas people who might be affected by other regulations will not have as much access to the courts.

*Somers:* Absolutely. This is a deep-pocket industry, and it’s just going to open the floodgates to more litigation for the well-resourced and connected among us — these big agencies, big corporations. It’s true that from the beneficiary side, or the patient side, you also may want to argue with an interpretation of a regulation, but it’s much less likely that you will have the resources and the time and really the knowledge to be able to do it. So the deck is really stacked in favor of industry after this.

*Rovner:* So one of the things that was in this decision or that [Chief] Justice [John] Roberts wrote was that this did not open the floodgates to go back and look at previous regulations. You couldn’t go backwards. I know that was a big concern. But there was another case that kind of said, “Well, maybe you can tell us about that other case.”

*Somers: Yes. And let me just comment for a second on what Justice Roberts said, which is that, oh, this doesn’t mean that cases decided under Chevron aren’t good law anymore. In order to disrupt that you’d need some kind of special factors or special consideration. As Justice [Elena] Kagan pointed out, we don’t know what that would look like and anybody can come up with a special reason, an important reason it should be overturned. And it also, more importantly, forget the ones that are settled, the ones that have never been challenged because industry might’ve thought, well, it’s not worth it. Well, now it is worth it, right? And that bleeds to the next case, which is about Corner Post v. Board of Governors of [the] Federal Reserve [System]. And I will say, speaking for myself, this one snuck up on me a little bit. We’ve been watching Loper Bright* for a long time. Our organization filed an amicus brief in the case.

The Corner Post kind of snuck up. And it’s about, once again something very far removed from health policy, about debit card fees that get passed on to merchants, and they hate it. And so two big industry groups came after this regulation, saying even though the statute of limitations had passed, we’re challenging it. Normally it’s six years after a regulation is final you have to challenge it. But they said that’s not fair, we didn’t even exist. And so now that we’re harmed by it, we should be able to challenge it. And sure enough, six out of the three justices said, “Yeah, that’s right.” And so what that means is everybody can look around and take a fresh look at things that have been on the books seven years, 10 years, 20 years, who knows? Including as Justice [Ketanji Brown] Jackson pointed out, cases about drug approval like approving mifepristone, the drug that’s used in abortions. So it all just weaves together into a web that is going to tangle up health advocates, patients, providers, and it’s really scary.

*Rovner:* Well, let’s move on to the abortion cases. There were two this term. One of the two was challenging the FDA’s approval of the abortion pill mifepristone. The other was asking whether a federal law that requires hospitals to provide emergency stabilizing care for pregnant women and others — including potentially abortion — overrides Idaho’s near-total ban on the procedure. In both cases, the court avoided reaching the merit. So we don’t really know what the justices think or what they might’ve ruled, but let’s take them one at a time. Let’s talk about what happened with the abortion pill case. That was the one brought by a group of conservative health professionals in Texas.

*Somers: Right. These providers, doctors, and dentists said that it violated their religious beliefs to have to have anything to do with abortion. And even though they were not going to ever prescribe it, they argued, What if somehow we had to be burdened by treating somebody who had taken this pill? Well, they didn’t actually have any evidence that that had happened. And so what the court said was, you actually don’t have a stake in this other than a political one. And we’re not here to get into political questions like that. That’s not what the courts are for. You have to have what’s called standing, meaning, what’s your stake in this? How are you going to be harmed? Which is absolutely true and kind of a mark in contrast to Loper Bright*, where really was the standing of these groups that were suing. But anyway, what goes on here in this case is that the court said you don’t have standing, but that doesn’t mean nobody could have standing. Who knows?

And so, sure enough, the states are waiting in the wings to bring it up themselves and argue anew that they’re the ones who are being harmed by it. So it’s an undead kind of issue, and it’s almost certain to come back and haunt us.

*Rovner:* You already mentioned that drugmakers in general have been kind of freaked out by the idea of judges making scientific decisions that overrule the FDA. That could still happen, right?

*Somers:* Absolutely. And the FDA is barraged by lawsuits. They have so many fronts on which already they have to defend themselves. And in addition to agencies being timid, there long have been concerns about industry capture in different parts of the agency. And so there already are so many areas on which they’re vulnerable in trying to regulate drugs. This is just one new blow.

*Rovner:* So the other case, as I said, pits Idaho’s abortion ban against the Federal Emergency Medical Treatment and Active Labor Act, EMTALA. Remind us again what EMTALA is and how it could relate to abortion.

*Somers:* What EMTALA is is a very important federal law that says that hospitals have to provide necessary stabling treatment to people who arrive in an emergency medical condition. And this means not just treatment to save somebody’s life, but also to prevent any kind of serious impairment to bodily functions or great pain or serious dysfunction or other types of jeopardy. So what that meant is EMTALA is requiring hospitals in every state to provide certain kinds of treatment that are banned by Idaho’s abortion ban. For example, Idaho’s abortion ban says you can’t provide any kind of abortion care unless someone is at the verge of death. And so there are a lot of situations — and they’ve already been happening in Idaho, while this law has been in effect — where you might have devastation to your reproductive organs, you might be in horrible pain. The pregnancy isn’t viable and you’re suffering because of this law that is conflicting with EMTALA.

And so the argument is: Federal law is superior to state law, and federal law has to rule if there’s a conflict with state law. And so in this case, the district court in Idaho said, “Yeah, this violates EMTALA.” And the court ended up taking it away from the 9th Circuit Court of Appeals, the Supreme Court did, and lifting the stay. And now what that meant was that the law was in effect, pregnant people were suffering horribly, having to be airlifted out of the state. And what does the court do at the end of the day but come back and say, “Yeah, we shouldn’t have done that. We’re going to let this go back and they’re going to figure this out more fully.” And the stay is going to stay in effect. That’s all fine and good in Idaho, for now. But then you already have the 5th Circuit, which has similar laws that are in effect. And so those people down there and the doctors who are trying to treat them are still in limbo.

And that’s what Justice Jackson said in her dissent, which is like you’re just leaving all these people in the lurch and doctors don’t know what to do. They’re scared of getting prosecuted, and so you should have just decided this instead of saving it for another day. And the majority kind of gave a roadmap to the court of appeals like, here’s how you can show that this actually doesn’t conflict with EMTALA.

*Rovner:* Which, I mean, the general rule is that federal laws are supreme to conflicting state laws, right? That’s a kind of …

*Somers: Exactly. Federal law preempts state law, and it shouldn’t be a hard question. It’s the kind of thing that 10 years ago, regardless of Dobbs [v. Jackson Women’s Health Organization*] would not have been a closed question.

*Rovner:* And technically the court just kind of said, “Oops, we shouldn’t have taken this case, or at least we shouldn’t have taken it now.” I read that as being they could not come to an agreement that they were likely, like, split 3-3-3. Is that your reading, too?

*Somers:* That’s the speculation. We never really know what goes on behind those closed doors. But it did seem like a real punt and a throwing up of the hands like, well, we don’t know what to do. So we’re just going to call this whole thing off. It was interesting too, to see Justice Jackson along with Justice [Clarence] Thomas and [Samuel] Alito saying, “We should decide this.” But they wanted to decide it very differently. They wanted to just call the question once and for all, but that’s not what happened.

*Rovner:* In both of these abortion cases, if Donald Trump is returned to office, his administration could likely just do itself what the plaintiffs are seeking here, right?

*Somers:* Yeah. A federal law could be passed if Congress was all Republican and Trump was president. There are all kinds of things that they could do through this. They could try to amend EMTALA. Who knows the mischief they could get into, the policymakers?

*Rovner:* But even if Congress remains, or at least one house of Congress remains in Democratic hands, one presumes that the administration would be pushed to both alter its interpretation of EMTALA and perhaps revoke the approval of mifepristone. Those are both theoretical things that the administration could do, right?

*Somers:* Absolutely. There’s executive action that could endanger access to abortion. Of course legislative action. And then there are these legal issues looming in the courts that could just come back again.

*Rovner:* So none of these cases are over. The court in the past few weeks also ruled in a couple of cases I call health care-adjacent. In one, the justices overturned a bankruptcy settlement reached between state governments and families of people who died of opioid overdoses, and Purdue Pharma, the company that made OxyContin and lied about how addictive it was. What happened in this case? What was the Supreme Court doing in a bankruptcy case?

*Somers:* Yes, questions were raised about the settlement. This is a huge settlement, billions of dollars on behalf of all the people who died and suffered from addiction because of the drugs that were being prescribed at a time when people weren’t aware of how addictive they were. The majority said that the settlement was not adequate to protect debtors or even the creditors and other victims. And all this work had gone into, all this time to try to come up with the settlement, but the majority was saying, this just gets the defendants too much off the hook. They still have too much of themselves protected from bankruptcy and from debtors and from creditors.

*Rovner:* One of the terms of the settlement was that it would basically eliminate any future claims against the Sackler family, the people who own Purdue Pharma.

*Somers:* Exactly. It really arguably let them off the hook. But at the same time, the dissent in this case said, “Look, this has been so hard-fought. It’s been so difficult to get everybody on the same page. There’s so much money at stake. And some of these people are in really dire straits and they need the money now.” So it was a real trade-off between are you really letting the bad actors off the hook, and what do you take today so that you can get the most relief for people as quickly as possible? Definitely not something as a health advocate I thought I’d have to think about bankruptcy, but think about it I did.

*Rovner:* And it was not decided ideologically.

*Somers:* Not at all.

*Rovner:* It was a very odd breakdown of justices with liberals and conservatives on both sides.

*Somers:* Exactly. And you can see the liberal and conservative arguments on both. You know what I mean?

*Rovner:* Let’s put it this way, I was glad I wasn’t being asked to decide that case.

*Somers:* 100%, oh my gosh, yes.

*Rovner:* Finally, the court ruled in a case out of Grants Pass, Oregon, that cities can enforce bans against sleeping in public even if the sleepers have no homes and no other access to shelter. This is also kind of health care-adjacent but could have repercussions, right?

*Somers:* Yeah, it’s health care-adjacent in two senses. One is the arguments that the local governments were making, which is that having people camping in public places is a public health problem. There’s a lot of attendant problems that the local governments say they have to deal with that affect the health of the community. But it’s also an important health issue from the perspective of the people who are unhoused, who are forced to sleep in their cars or in public, because housing is one of the primary drivers of health. And we know there’s a horrible housing crisis in this country. It’s not just people who have limited income who can’t find housing. People at higher and higher income levels are struggling to find housing now. And so it just seemed like the ultimate cruelty to say to people, yes, we know you don’t have housing. We know it’s impossibly unaffordable. We know there’s a shortage. And the same time, too bad for you.

The underpinning of this decision is for years they had said it’s a cruel and unusual punishment under the Eighth Amendment to have criminal penalties against people because of their status. Like you can’t have criminal penalties for being an addict. You can’t have criminal penalties for someone being homeless. But what they split this hair and said, well, it’s not for being homeless it’s because they’re camping. And Justice [Sonia] Sotomayor in her dissent sort of said, “Oh, come on. That’s really a distinction without a difference.” And it’s the real concern on the part of Justice [Neil] Gorsuch — writing for the majority — was for the local governments and how hard this was on them and how difficult. And OK, but it’s really hard on the people who are going to be forced to stay awake or go to jail.

*Rovner:* And it’s not like a lot of these people can just move on. Many of them have jobs in the community. They just don’t pay enough for them to be able to afford housing.

*Somers:* They have jobs and they have families and their kids can be in school. There’s all kinds of reasons they want to stay there. And there was also discussion of, well, there really is shelter space but people don’t want to go because they don’t want to be forced to go to religious services, because they don’t want to be in a sober house. Well, I don’t know. That was subject to dispute in the record. But also there’s other reasons of safety and concern not going to shelters. And something that looks available on paper may not actually be available. So, it’s very cruel.

*Rovner:* To wrap up, which of these cases do you think is going to have the most lasting significance when it comes to health care?

*Somers: That’s a really good question. Right now, because of the potential chaos it can unleash, I would say sort of the one-two punch of Loper Bright and Corner Post*. It seems like that could be a real shock to the system and cause a real upheaval in administrative law. Sometimes these things don’t shake out as badly as we think they do. It may be that most judges who are faced with these cases that aren’t ideological may be like, “You know what? I do want to defer to the agency because I don’t know anything about the Two-Midnight Rule in Medicare. I don’t know anything about actuarial soundness and Medicaid managed care, so why don’t I let the agency do that?” But at least in the short term it’s going to be pretty disruptive.

*Rovner:* Yeah. And to be clear, the ruling didn’t say they can’t defer to the agency. The ruling just said they don’t have to defer to the agency.

*Somers: Exactly. And Justice Roberts in his majority opinion cited a case called Skidmore [doctrine], which is a level of deference to the agency that’s like a step below Chevron [doctrine]. And it just says you need to give it respectful deference based on how reasonable it is. And sometimes in practice, Chevron and Skidmore* may not look that different. And so I remain hopeful that courts will still show respectful deference to the civil servants who really know what’s going on.

*Rovner:* We shall keep an eye on it. Sarah Somers, thank you so much for this Supreme Court wrap-up.

*Somers:* Sure. I’m happy to do it.

*Rovner:* So, OK, that is our show for this holiday week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks as always to our technical guru, Francis Ying, and our editor, Emmarie Huetteman. As always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can still find me at X, @jrovner. We will be back in your feed next week. Have a lovely holiday. And until then, be healthy.

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In Terre Haute, Ind., two rival hospitals want to merge, a move that supporters say will save patients money and help people live longer.

But similar hospital consolidations in Tennessee, Virginia and North Carolina have resulted in government reports documenting diminished care.

In more than a dozen states, certificates of public advantage (COPAs) permit deals like the one on the table in Indiana, even though the Federal Trade Commission otherwise considers them illegal because they reduce competition. As a result, the FTC has warned states to avoid COPAs and the mergers they create.

In Terre Haute, state regulators will decide whether to allow Union Hospital to purchase the surrounding county’s only other acute care facility, Terre Haute Regional Hospital. The merger would be the first deal under the state’s 2021 COPA law. Aside from the FTC’s concerns about the anti-competitive nature of these deals, there’s another, potentially bigger question: Does allowing hospitals to combine forces improve patient care?

The largest COPA-created hospital system in the country, Tennessee-based Ballad Health, has reported that the time patients spend in its ERs in Virginia and Tennessee before being hospitalized has more than tripled, reaching nearly 11 hours, in the six years since that monopoly of 20 hospitals formed.

The FTC has been closely examining the effects mergers have on prices, quality and even employee wages. In 2019, the FTC ordered multiple insurers and COPA-created health systems, including Ballad, to turn over information. The FTC declined to provide an update on the status of its findings.

To mitigate the negative effects of a monopoly, merged hospitals typically agree to conditions imposed by state regulators. Still, Tennessee has awarded Ballad top marks even when certain quality metrics, including its ER speed, fall below its established benchmarks.

Ballad Health spokesperson Molly Luton said the system’s performance has improved since statistics were collected for its 2023 fiscal year, which ended June 30, 2023, and that ER wait times have shortened.

COPA arrangements have also led to fallout in nearby North Carolina. When the state repealed its 2015 COPA law, it removed state oversight of Asheville’s Mission Health system, which was required as part of the merger. That meant the local monopoly remained but none of the COPA’s conditions applied when a subsidiary of HCA Healthcare bought the system for $1.5 billion in 2019.

Last year, government inspectors found “deficiencies” at Mission Health that contributed to four patient deaths and posed an “immediate jeopardy” to patients’ health and safety, according to the 384-page federal inspection report.

North Carolina Attorney General Joshua Stein sued HCA’s subsidiary, alleging that the ER was “significantly degraded” and that the company did not maintain certain critical services, including oncology care, a violation of a purchase agreement Stein’s office negotiated because the company acquired a nonprofit.

HCA said it promptly addressed the issues found in the inspections and denied Stein’s allegations in its response to the ongoing lawsuit, arguing that it has expanded services. HCA also contended the agreement is silent about maintaining the quality of care.

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What weighs most heavily on older adults’ minds when it comes to health care?

The cost of services and therapies, and their ability to pay.

“It’s on our minds a whole lot because of our age and because everything keeps getting more expensive,” said Connie Colyer, 68, of Pleasureville, Kentucky. She’s a retired forklift operator who has lung disease and high blood pressure. Her husband, James, 70, drives a dump truck and has a potentially dangerous irregular heart rhythm.

Tens of millions of seniors are similarly anxious about being able to afford health care because of its expense and rising costs for housing, food, and other essentials.

A new wave of research highlights the reach of these anxieties. When the University of Michigan’s National Poll on Healthy Aging asked people 50 and older about 26 health-related issues, their top three areas of concern had to do with costs: of medical care in general, of long-term care, and of prescription drugs. More than half of 3,300 people surveyed in February and March reported being “very concerned” about these issues.

In fact, five of the top 10 issues identified as very concerning were cost-related. Beyond the top three, people cited the cost of health insurance and Medicare (52%), and the cost of dental care (45%). Financial scams and fraud came in fourth place (53% very concerned). Of much less concern were issues that receive considerable attention, including social isolation, obesity, and age discrimination.

In an election year, “our poll sends a very clear message that older adults are worried about the cost of health care and will be looking to candidates to discuss what they have done or plan to do to contain those costs,” said John Ayanian, director of the University of Michigan’s Institute for Healthcare Policy and Innovation.

Older adults have good reason to worry. One in 10 seniors (about 6 million people) have incomes below the federal poverty level. About 1 in 4 rely exclusively on Social Security payments, which average $1,913 a month per person.

Even though inflation has moderated since its 2022 peak, prices haven’t come down, putting a strain on seniors living on fixed incomes.

Meanwhile, traditional Medicare doesn’t cover several services that millions of older adults need, such as dental care, vision care, or help at home from aides. While private Medicare Advantage plans offer some coverage for these services, benefits are frequently limited.

All of this contributes to a health care affordability squeeze for older adults. Recently published research from the Commonwealth Fund’s 2023 Health Care Affordability Survey found that nearly a third of people 65 or older reported difficulty paying for health care expenses, including premiums for Medicare, medications, and expenses associated with receiving medical services.

One in 7 older adults reported spending a quarter or more of their average monthly budget on health care; 44% spent between 10% and 24%. Seventeen percent said they or a family member had forgone needed care in the past year for financial reasons.

The Colyers in Pleasureville are among them. Both need new dentures and eyeglasses, but they can’t afford to pay thousands of dollars out-of-pocket, Connie said.

“As the cost of living rises for basic necessities, it’s more difficult for lower-income and middle-income Medicare beneficiaries to afford the health care they need,” said Gretchen Jacobson, vice president of the Medicare program at the Commonwealth Fund. Similarly, “when health care costs rise, it’s more difficult to afford basic necessities.”

This is especially worrisome because older adults are more prone to illness and disability than younger adults, resulting in a greater need for care and higher expenses. In 2022, seniors on Medicare spent $7,000 on medical services, compared with $4,900 for people without Medicare.

Not included in this figure is the cost of assisted living or long-term stays in nursing homes, which Medicare also doesn’t cover. According to Genworth’s latest survey, the median annual cost of a semiprivate room in a nursing home was $104,000 in 2023, while assisted living came to $64,200, and a week’s worth of services from home-health aides averaged $75,500.

Many older adults simply can’t afford to pay for these long-term care options or other major medical expenses out-of-pocket.

“Seventeen million older adults have incomes below 200% of the federal poverty level,” said Tricia Neuman, executive director of the Program on Medicare Policy for KFF. (That’s $30,120 for a single-person household in 2024; $40,880 for a two-person household.) “For people living on that income, the risk of a major expense is very scary.”

How to deal with unanticipated expenses in the future is a question that haunts Connie Colyer. Her monthly premiums for Medicare Parts B and D, and a Medigap supplemental policy come to nearly $468, or 42% of her $1,121 monthly income from Social Security.

With a home mortgage of $523 a month, and more than $150 in monthly copayments for her inhalers and her husband’s heart medications, “we wouldn’t make it if my husband wasn’t still working,” she told me. (James’ monthly Social Security payment is $1,378. His premiums are similar to Connie’s and his income fluctuates based on the weather. In the first five months of this year, it approached $10,000, Connie told me.)

The couple makes too much to qualify for programs that help older adults afford Medicare out-of-pocket costs. As many as 6 million people are eligible but not enrolled in these Medicare Savings Programs. Those with very low incomes may also qualify for dual coverage by Medicaid and Medicare or other types of assistance with household costs, such as food stamps.

Older adults can check their eligibility for these and other programs by contacting their local Area Agency on Agency, State Health Insurance Assistance Program, or benefits enrollment center. Enter your ZIP code at the Eldercare Locator and these and other organizations helping seniors locally will come up.

Persuading older adults to step forward and ask for help often isn’t easy. Angela Zeek, health and government benefits manager at Legal Aid of the Bluegrass in Kentucky, said many seniors in her area don’t want to be considered poor or unable to pay their bills, a blow to their pride. “What we try to say is, ‘You’ve worked hard all your life, you’ve paid your taxes. You’ve given back to this government so there’s nothing wrong with the government helping you out a bit.’”

And the unfortunate truth is there’s very little, if any, help available for seniors who aren’t poor but have modest financial resources. While the need for new dental, vision, and long-term care benefits for older adults is widely acknowledged, “the question is always how to pay for it,” said Neuman of KFF.

This will become an even bigger issue in the coming years because of the burgeoning aging population.

There is some relief on the horizon, however: Assistance with Medicare drug costs is available through the 2022 Inflation Reduction Act, although many older adults don’t realize it yet. The act allows Medicare to negotiate the price of prescription drugs for the first time. This year, out-of-pocket costs for medications will be limited to a maximum $3,800 for most beneficiaries. Next year, a $2,000 cap on out-of-pocket drug costs will take effect.

“We’re already seeing people who’ve had very high drug costs in the past save thousands of dollars this year,” said Frederic Riccardi, president of the Medicare Rights Center. “And next year, it’s going to get even better.”

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If you or someone you know may be experiencing a mental health crisis, contact the 988 Suicide & Crisis Lifeline by dialing or texting “988.”

For the most part, Cori Lint was happy.

She worked days as a software engineer and nights as a part-time cellist, filling her free hours with inline skating and gardening and long talks with friends. But a few days a month, Lint’s mood would tank. Panic attacks came on suddenly. Suicidal thoughts did, too.

She had been diagnosed with anxiety and depression, but Lint, 34, who splits her time between St. Petersburg, Florida, and Tulsa, Oklahoma, struggled to understand her experience, a rift so extreme she felt like two different people.

“When I felt better, it was like I was looking back at the experience of someone else, and that was incredibly confusing,” Lint said.

Then, in 2022, clarity pierced through. Her symptoms, she realized, were cyclical. Lint recognized a pattern in something her doctors hadn’t considered: her period.

For decades, a lack of investment in women’s health has created gaps in medicine. The problem is so prevalent that, this year, President Joe Biden signed an executive order to advance women’s health research and innovation.

Women are less likely than men to get early diagnoses for conditions from heart disease to cancer, studies have found, and they are more likely to have their medical concerns dismissed or misdiagnosed. Because disorders specifically affecting women have long been understudied, much remains unknown about causes and treatments.

That’s especially true when it comes to the effects of menstruation on mental health.

When Lint turned to the internet for answers, she learned about a debilitating condition at the intersection of mental and reproductive health.

Sounds like me, she thought.

What Is PMDD?

Premenstrual dysphoric disorder, or PMDD, is a negative reaction in the brain to natural hormonal changes in the week or two before a menstrual period. Symptoms are severe and can include irritability, anxiety, depression, and sudden mood swings. Others include fatigue, joint and muscle pain, and changes to appetite and sleep patterns, with symptoms improving once bleeding begins.

Unlike the mild discomfort of premenstrual syndrome, or PMS, the effects of premenstrual dysphoric disorder are life-altering. Those afflicted, according to one estimate, can endure almost four years of disability, cumulatively, over their lives.

Though researchers estimate that the dysphoric disorder affects around 5% of people who menstruate — about the same percentage of women with diabetes — the condition remains relatively unknown, even among health care providers.

In a 2022 survey of PMDD patients published in the Journal of Women’s Health, more than a third of participants said their family doctors had little knowledge of the premenstrual disorder or how to treat it. About 40% said the same was true of their mental health therapists.

Reproductive mental health has been sidelined as a specialty, said Jaclyn Ross, a clinical psychologist who researches premenstrual disorders as associate director of the CLEAR Lab at the University of Illinois-Chicago. Only some health care providers get training or even become aware of such disorders, Ross said.

“If you’re not considering the menstrual cycle, you’re at risk of misdiagnosing and missing what’s actually going on,” Ross said.

That was the case for Tampa, Florida, resident Jenna Tingum, 25, who had panic attacks and suicidal thoughts as a premed student at the University of Florida. It wasn’t until her college girlfriend read about PMDD online and noticed Tingum’s symptoms flared in the days leading up to her period that Tingum talked with her gynecologist.

“I don’t think I would have ever put the pieces together,” Tingum said.

Suicide Risk and Treatment

Because few researchers study the condition, the cause of PMDD is something of an enigma, and treatments remain limited.

It wasn’t until 2013 that the disorder was added to the Diagnostic and Statistical Manual, the handbook used by medical professionals in the U.S. to diagnose psychiatric conditions. PMDD was officially recognized by the World Health Organization in 2019, though references in medical literature date to the 1960s.

Defining the disorder as a medical condition faced early pushback from some feminist groups wary of giving credibility to stereotypes about PMS and periods. But Ross said patients must be taken seriously.

In one study, 72% of respondents with the disorder said they’d had suicidal thoughts in their lifetime. And 34% said they had attempted suicide, compared with 3% of the general population.

Marybeth Bohn lost her daughter, Christina Bohn, to suicide in 2021. It was only in the months before her death at age 33 that Christina connected her extreme distress to her cycle — no doctors had asked, Bohn said. Now Bohn, who lives in Columbia, Missouri, works with medical and nursing schools around the country to change curricula and encourage doctors to ask people in mental health emergencies about their premenstrual symptoms and cycles.

“We need more research to understand how and why these reactions to hormones occur,” Ross said. “There’s so much work to be done.”

While doctors haven’t settled on a universal approach to address the symptoms, three main treatments have emerged, said Rachel Carpenter, medical director of reproductive psychiatry at the University of Florida–Jacksonville College of Medicine.

Selective serotonin reuptake inhibitors, the most common form of antidepressants, are a first line of attack, Carpenter said. Some patients take the medication regularly; others in just the week or two that symptoms occur.

For some patients, hormonal birth control can alleviate symptoms by controlling or preventing the release of certain hormones.

Finally, talk therapy and cycle awareness can help patients build mental resilience for difficult weeks.

Sandi MacDonald, who co-founded the International Association for Premenstrual Disorders, a leading resource for patients and clinicians, said peer support is available through the nonprofit, but funding for research and education remains elusive.

She hopes the new White House initiative on advancing women’s health research will open doors.

Let’s Talk About Periods

Both Lint and Tingum, who were diagnosed by medical professionals after learning about the disorder on their own, said a lack of conversation around periods contributed to their care being delayed.

Lint doesn’t remember talking much about periods in grade school; they were often the butt of a joke, used to dismiss women.

“For the longest time, I thought, ‘Well, this happens to everyone, right?’” Lint said of her symptoms. “Has a doctor ever asked me what my symptoms are like? No, absolutely not. But we’re talking about a quarter or more of my life.”

Brett Buchert, a former University of Florida athlete who took time away from campus because her symptoms were so severe, said that when doctors do ask questions, it can feel like boxes being checked: “The conversation ends there.”

Buchert, who graduated with a degree in psychology and now lives in Boulder, Colorado, said understanding what’s happening to her and being aware of her cycle has helped her manage her condition.

Lint and Tingum agreed.

Even as Lint struggles to find a medicine that brings relief, tracking her cycle has allowed her to plan around her symptoms, she said. She makes fewer commitments in the week before her period. She carves out more time for self-care.

She’s also found solace in reading stories of others living with the condition, she said.

“It’s helped me process the extremes,” Lint said. “There’s not something wrong with me as an individual. I’m not crazy; this is something that’s legitimately happening to me. It helps to know I’m not alone.”

This article was produced through a partnership between KFF Health News and the Tampa Bay Times.

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

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SANDPOINT, Idaho — The ultrasound in February that found a mass growing in her uterus and abnormally thick uterine lining brought Jonell Anderson more than anxiety over diagnosis and treatment.

For Anderson and other patients in this rural community who need gynecological care, stress over discovering an illness is compounded by the challenges they face getting to a doctor.

After that initial ultrasound, Anderson’s primary care provider referred her to an OB-GYN nearly an hour’s drive away in Coeur d’Alene for more testing.

Getting care for more serious gynecological issues, like a hysteroscopy, endometriosis, or polycystic ovary syndrome, has become much more difficult in Sandpoint, a town of about 10,000 people in Idaho’s panhandle region. A state law criminalizing abortions drove multiple OB-GYNs to leave town about a year ago.

The effects have been far-reaching. The OB-GYNs who left Sandpoint were also providing care to patients in nearby outlying areas, like Bonners Ferry, a roughly 40-minute drive into Idaho’s northernmost county. Doctors have spoken out about not feeling safe practicing medicine where they could face criminal charges for providing care to their patients. Republican lawmakers in Idaho contend doctors are being used in an effort to roll back the ban, and they declined to amend the law this year.

According to the Idaho Coalition for Safe Healthcare, a group advocating for a rollback of the state’s strict abortion ban, at least two hospitals, including Bonner General Health in Sandpoint, ended labor and delivery services in the 15 months after the state criminalized abortion in 2022. During that same time period, the number of OB-GYNs practicing in Idaho dropped by 22%. The report’s authors noted that many rural residents rely on consultations from medical specialists in urban parts of the state that are already struggling to provide care.

Those departures have expanded care deserts and added obstacles between patients and care, including for Anderson, 49.

Anderson’s car broke down when she was on the way to see an OB-GYN in Coeur d’Alene a few weeks after her initial ultrasound. Her husband took off work to drive her to a rescheduled appointment the same day. After hours of mishaps, she arrived for the visit, which lasted about 15 minutes. There, the doctor told her she’d need to come back for a hysteroscopy — an exam that shows the inside of the cervix and uterus — a few weeks later, followed by another appointment to go over results.

Four months later, in June, early results showed that the mass in Anderson’s uterus did not appear to be cancerous. She’s relieved, she said, but still concerned about nearing menopause and not having the support of an OB-GYN nearby to help her manage any symptoms or health issues that could come up.

“It sure was a whole level of stress that just added on because I had so much further to transport,” Anderson said. “Three years ago I would have been 10 minutes away from my appointment, not 60 minutes away.”

Those hardships patients face weigh heavily on the specialists who left.

Amelia Huntsberger, an OB-GYN, said that she and her husband are still grappling with a feeling of grief after being “forced out of Idaho” last year. They had lived in the state for more than a decade and practiced in Sandpoint. While leaving was a difficult decision, she said, she has no doubt it was the right one for her; her husband, who was a doctor in the emergency room at Bonner General; and their children.

“I think about things like who we are as a people,” Huntsberger said. “What do we value, and do our actions reflect our values?” Limiting access to care for women, pregnant or not, and their infants suggests lawmakers do not consider them important, she said.

Usha Ranji, an associate director for Women’s Health Policy at KFF, said she has heard anecdotally about providers leaving states with strict abortion bans like Idaho’s. Some recent medical graduates are also avoiding residency positions in states restricting abortion, making it harder to replace the outgoing providers, Ranji said.

Sandy Brower, a spokesperson for Bonner General, said the hospital is working to hire a gynecologist and is focused on building out its family provider team. She said other providers at the hospital are still treating women before and after pregnancy, but not during delivery unless it’s an emergency and the person cannot be transported.

Susie Keller, CEO of the Idaho Medical Association, said there’s a growing number of doctor vacancies in the state and that the number of applicants has “absolutely plummeted and those jobs are taking about twice as long as normal to fill.

“We are witnessing the dismantling of our health system,” Keller said.

As more community members feel the effects of a strained health system, some are following in the path of the doctors — they’re considering leaving. Anderson is among them.

Local education issues play a large part in that decision-making process, she said, as she considers her 9-year-old daughter’s future. But access to women’s health care is another piece of the puzzle.

“If I don’t have the care I need and she doesn’t have the care she needs,” Anderson said, “is that really somewhere we want to live?”

Ranji said polling indicates health care is a priority for people, so it could play into decisions about where they want to plant roots. And that leads into another way community members could respond to the changes in local care — by voting in state elections.

Primary election results from May in northern Idaho, where Sandpoint is located, showed signs of voters backing Republican candidates who hold more moderate views on abortion. Former state Sen. Jim Woodward narrowly beat Sen. Scott Herndon, a fellow Republican who sought reelection to his seat in the legislature.

Woodward, a self-described pro-life candidate with a stance against elective abortions, supports efforts to include exceptions for the health of the mother and removing the threat of felony charges against doctors who perform abortions. Herndon, on the other hand, provoked strong reactions during last year’s legislative session when he sponsored a bill that would have removed the already strict law’s current narrow exceptions for rape and incest.

Kathryn Larson, 66, has been campaigning as a Democrat for a seat representing most of Boundary and Bonner counties, the two northernmost in the panhandle region, in the state’s House of Representatives. She also has had recent firsthand experience falling into the care gap created by the exodus of OB-GYNs in Sandpoint.

In January, Larson went to the emergency room at Bonner General, a 25-bed critical access hospital, with severe chest pains. A cardiologist suggested an infection could be to blame. Larson said she also experienced vertigo and rapid heartbeat and later developed symptoms of a urinary tract infection. She was given rounds of antibiotics to treat the infection, but the symptoms returned.

More testing finally revealed the crux of the issue — Larson was dealing with a prolapsed bladder, which is not life-threatening but causes discomfort or pain and affects 1 in 3 women in their 60s.

After about five months of back-and-forth communication with providers in Post Falls and the eastern Washington city of Spokane, she scheduled an appointment for surgery in early June in Spokane, more than an hour’s drive from Sandpoint. Following surgery, during which doctors implanted a mesh structure to support her bladder, Larson is spending six to eight weeks recovering before heading into the final stretches of election season.

She said the November election will help others in her party tell if it will be possible to work across the aisle to loosen restrictions on the abortion policy during next year’s legislative session. She wants to slow the loss of needed providers across the state.

“People don’t feel safe,” Larson said.

The U.S. Supreme Court ruled on June 27 that Idaho must for now continue to allow abortions in medical emergencies. The ruling came in a lawsuit filed by the Biden administration, which argued that the federal Emergency Medical Treatment and Labor Act requires such care.

But the ruling does not provide a permanent solution. It kicks the case back to lower courts. Confusion remains over a doctor’s ability to perform abortions even in emergency settings, and the Idaho Medical Association said it will continue to work toward a clear health-of-the-mother exception within state law during next year’s legislative session.

“We still need more clarity for our state’s doctors,” OB-GYN Megan Kasper said in a medical association press release.

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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“You had to pay the fee, or the doctor wasn’t going to see you anymore.”

That was the takeaway for Terri Marroquin of Midland, Texas, when her longtime physician began charging a membership fee in 2019. She found out about the change when someone at the physician’s front desk pointed to a posted notice.

At first, she stuck with the practice; in her area, she said, it is now tough to find a primary care doctor who doesn’t charge an annual membership fee from $350 to $500.

But last year, Marroquin finally left to join a practice with no membership fee where she sees a physician assistant rather than a doctor. “I had had enough. The concierge fee kept going up, and the doctor’s office kept getting nicer and nicer,” she said, referring to the décor.

With the national shortage of primary care physicians reaching 17,637 in 2023 and projected to worsen, more Americans are paying for the privilege of seeing a doctor — on top of insurance premiums that cover most services a doctor might provide or order. Many people seeking a new doctor are calling a long list of primary care practices only to be told they’re not taking new patients.

“Concierge medicine potentially leads to disproportionately richer people being able to pay for the scarce resource of physician time and crowding out people who have lower incomes and are sicker,” said Adam Leive, lead author of a 2023 study on concierge medicine and researcher at University of California-Berkeley’s Goldman School of Public Policy.

Leive’s research showed no decrease in mortality for concierge patients compared with similar patients who saw non-concierge physicians, suggesting concierge care may not notably improve some health outcomes.

A 2005 study showed concierge physicians had smaller proportions of patients with diabetes than their non-concierge counterparts and provided care for fewer Black and Hispanic patients.

There’s little reliable data available on the size of the concierge medicine market. But one market research firm projects that concierge medicine revenue will grow about 10.4% annually through 2030. About 5,000 to 7,000 physicians and practices provide concierge care in the United States, most of whom are primary care providers, according to Concierge Medicine Today. (Yes, the burgeoning field already has a trade publication.)

The concierge pitch is simple: More time with your doctor, in-person or remotely, promptly and at your convenience. With many primary care physicians caring for thousands of patients each in appointments of 15 minutes or less, some people who can afford the fee say they feel forced to pay it just to maintain adequate access to their doctor.

As primary care providers convert to concierge medicine, many patients could face the financial and health consequences of a potentially lengthy search for a new provider. With fewer physicians in non-concierge practices, the pool available to people who can’t or won’t pay is smaller. For them, it is harder to find a doctor.

Concierge care models vary widely, but all involve paying a periodic fee to be a patient of the practice.

These fees are generally not covered by insurance nor payable with a tax-advantaged flexible spending account or health savings account. Annual fees range from $199 for Amazon’s One Medical (with a discount available for Prime members) to low four figures for companies like MDVIP and SignatureMD that partner with physicians, to $10,000 or more for top-branded practices like Massachusetts General Hospital’s.

Many patients are exasperated with the prospect of pay-to-play primary care. For one thing, under the Affordable Care Act, insurers are required to cover a variety of preventive services without a patient paying out-of-pocket. “Your annual physical should be free,” said Caitlin Donovan, a spokesperson for the National Patient Advocate Foundation. “Why are you paying $2,000 for it?”

Liz Glatzer felt her doctor in Providence, Rhode Island, was competent but didn’t have time to absorb her full health history. “I had double mastectomy 25 years ago,” she said. “At my first physical, the doctor ran through my meds and whatever else, and she said, ‘Oh, you haven’t had a mammogram.’ I said, ‘I don’t have breasts to have mammography.’”

In 2023, after repeating that same exchange during her next two physicals, Glatzer signed up to pay $1,900 a year for MDVIP, a concierge staffing service that contracts with her new doctor, who is also a friend’s husband. In her first couple of visits, Glatzer’s new physician took hours to get to know her, she said.

For the growing numbers of Americans who can’t or won’t pay when their doctor switches to concierge care, finding new primary care can mean frustration, delayed or missed tests or treatments, and fragmented health care.

“I’ve met so many patients who couldn’t afford the concierge services and needed to look for a new primary care physician,” said Yalda Jabbarpour, director of the Robert Graham Center and a practicing family physician. Separating from a doctor who’s transitioning to concierge care “breaks the continuity with the provider that we know is so important for good health outcomes,” she said.

That disruption has consequences. “People don’t get the preventive services that they should, and they use more expensive and inefficient avenues for care that could have otherwise been provided by their doctor,” said Abbie Leibowitz, chief medical officer at Health Advocate, a company that helps patients find care and resolve insurance issues.

What happens to patients who find themselves at loose ends when a physician transitions to concierge practice?

Patients who lose their doctors often give up on having an ongoing relationship with a primary care clinician. They may rely solely on a pharmacy-based clinic or urgent care center or even a hospital emergency department for primary care.

Some concierge providers say they are responding to concerns about access and equity by allowing patients to opt out of concierge care but stay with the practice group at a lower tier of service. This might entail longer waits for shorter appointments, fewer visits with a physician, and more visits with midlevel providers, for example.

Deb Gordon of Cambridge, Massachusetts, said she is searching for a new primary care doctor after hers switched to concierge medicine — a challenge that involves finding someone in her network who has admitting privileges at her preferred hospitals and is accepting new patients.

Gordon, who is co-director of the Alliance of Professional Health Advocates, which provides support services to patient advocates, said the practice that her doctor left has not assigned her a new provider, and her health plan said it was OK if she went without one. “I was shocked that they literally said, ‘You can go to urgent care,’” she said.

Some patients find themselves turning to physician assistants and other midlevel providers. But those clinicians have much less training than physicians with board certification in family medicine or internal medicine and so may not be fully qualified to treat patients with complex health problems. “The expertise of physician assistants and nurse practitioners can really vary widely,” said Russell Phillips, director of the Harvard Medical School Center for Primary Care.

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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KFF Health News senior correspondent Aneri Pattani discussed the Supreme Court’s Purdue Pharma decision and the opioid settlement on WHYY’s “Studio 2” on June 27.

• Click here to hear Pattani on “Studio 2”
• Read Pattani’s series “Payback: Tracking the Opioid Settlement Cash”

KFF Health News ethnic media editor Paula Andalo discussed California’s new heat rules on Radio Bilingüe’s “Línea Abierta” on June 22.

• Click here to hear Andalo on “Línea Abierta”
• Read Samantha Young’s “Heat Rules for California Workers Would Also Help Keep Schoolchildren Cool”
• Leer Samantha Young’s “Leyes que protegen a trabajadores de California del calor extremo ayudarían a estudiantes”

KFF Health News contributor Andy Miller discussed the impact of social media use on young people’s mental health on WUGA’s “The Georgia Health Report” on June 21.

• Click here to hear Miller on “The Georgia Health Report”

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

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The U.S. Supreme Court’s watershed decision on homelessness Friday will make it easier for elected officials and law enforcement authorities nationwide to fine and arrest people who live on streets and sidewalks, in broken-down vehicles, or within city parks — which could have far-reaching health consequences for homeless Americans and their communities.

In a 6-to-3 ruling in City of Grants Pass v. Johnson, the justices in the majority said allowing the targeting of homeless people occupying public spaces by enforcing bans on public sleeping or camping with criminal or civil penalties is not cruel and unusual punishment, even if there are no alternative shelter or housing options available for them.

“It’s hard to imagine the chaos that is going to ensue. It’ll have horrible consequences for mental and physical health,” said Ed Johnson, director of litigation at the Oregon Law Center and lead attorney representing homeless defendants in the case.

“If people aren’t allowed to engage in survival while living outside by having things like a blanket and a pillow, or a tarp and a sleeping bag, and they don’t have anywhere else to go, they can die,” he said.

The case, the most consequential on homelessness in decades, comes amid widespread public frustration over the proliferation of homeless encampments — especially in Western cities such as Los Angeles, San Francisco, Phoenix, and Portland, Oregon — and the unsafe and unsanitary conditions that often fester around them.

An estimated 653,100 people were homeless in the United States in 2023, according to the most recent federal estimates, the vast majority residing in shanties, broken-down recreational vehicles, and sprawling tent camps scattered across urban and rural communities.

The Oregon city of Grants Pass, at the center of the legal battle, successfully argued that it was not cruel and unusual punishment to fine and arrest homeless people living outdoors or illegally camping on public property.

Mike Zacchino, a spokesperson for Grants Pass, issued a statement Friday that the city was “grateful” to receive the decision and is committed to assisting residents struggling to find stable housing. Theane Evangelis, the city’s lead attorney, told the Supreme Court in April that if it couldn’t enforce its anticamping laws, “the city’s hands will be tied. It will be forced to surrender its public spaces.”

In the majority opinion, Justice Neil Gorsuch argued that the homelessness crisis is complex and has many causes, writing, “With encampments dotting neighborhood sidewalks, adults and children in these communities are sometimes forced to navigate around used needles, human waste, and other hazards to make their way to school, the grocery store, or work.”

However, Gorsuch wrote, the Eighth Amendment does not give the Supreme Court justices primary responsibility “for assessing those causes and devising those responses.” A handful of federal judges cannot “begin to ‘match’ the collective wisdom the American people possess in deciding ‘how best to handle’ a pressing social question like homelessness,” he wrote.

In a dissenting opinion, Justice Sonia Sotomayor wrote that the decision focuses on the needs of local government and “leaves the most vulnerable in our society with an impossible choice: Either stay awake or be arrested.”

Elected officials, both Republican and Democrat, have increasingly argued that life on the streets is making people sick — and they should be allowed to relocate people for health and safety.

“If government offers people help and they can’t or won’t accept it, there should be consequences. We have laws that need to be used,” said Sacramento Mayor Darrell Steinberg, who is an adviser to California Gov. Gavin Newsom on homelessness, referencing laws that allow the state to require mental health and addiction treatment, for instance.

The high court decision could further embolden cities to sweep encampments and could force homeless people to be more transient — constantly moving around to evade law enforcement. Sometimes they’re offered shelter, but often there is nowhere to go. Steinberg believes many cities will more aggressively sweep encampments and keep homeless people on the move, but he does not believe they should be fined or arrested.

“I’m comfortable telling people that you can’t camp in public, but I would not criminalize it,” he said. “Some cities will fine and arrest people.”

Advocates for homeless people say constant relocations will further imperil the health of this population and magnify public health threats, such as the spread of communicable diseases. They fear conservative-leaning communities will criminalize street camping, pushing homeless people to liberal municipalities that provide housing assistance and services.

“Some cities have decided that they want to fine, arrest, and punish people for being homeless, and the majority opinion tells communities that they can go ahead and do that,” said Steve Berg, chief policy officer for the National Alliance to End Homelessness. “If communities really want less homelessness, they need to do what works, which is make sure people have access to housing and supportive services.”

As they disperse and relocate — and possibly get arrested or slapped with fines — they will lose connections to the doctors and nurses who provide primary and specialty care on the streets, some health care experts say.

“It just is going to contribute to more death and higher mortality rates,” said Jim O’Connell, the president of Boston’s Health Care for the Homeless Program and an assistant professor of medicine at Harvard Medical School. “It’s tough, because there’s a public safety versus public health” debate cities are struggling with.

As homeless people become sicker, they will get more expensive to treat, O’Connell said.

“Stop thinking about the emergency room, which is cheap compared to what we actually see, which is homeless people being admitted to the ICU,” he said. “I’ve got 20-something patients at Mass General today taking a huge amount of money to care for.”

In Los Angeles, which has one of the biggest homeless populations in America, street medicine provider Brett Feldman predicts more patients will need emergency intensive care as chronic conditions like diabetes and heart disease go untreated.

Patients on anti-addiction medication or those undergoing treatment to improve their mental health will also struggle, he said.

“People are already getting moved and camps swept all the time, so we already know what happens,” Feldman said. “People lose their medications; they lose track of us.”

Homeless people die at rates two to six times higher than residents living in stable housing, according to a May report from the Los Angeles County Department of Public Health. Drug overdoses and coronary artery disease were the top two causes of death since 2017.

Feldman said it may become harder to house people or place them into treatment programs.

“We rely on knowing where they are in order to find them,” Feldman said. “And they rely on us knowing where they are to get their health care. And if we can’t find them, often they can’t complete their housing paperwork and they don’t get inside.”

The Biden administration has pushed states to expand the definition of health care to include housing. At least 19 are directing money from Medicaid — the state-federal health insurance program for low-income people — into housing aid.

California is going the biggest, pumping $12 billion into an ambitious Medicaid initiative largely to help homeless patients find housing, pay for it, and avoid eviction. It is also dramatically expanding street medicine services.

The Supreme Court decision could interrupt these programs, said Margot Kushel, a primary care doctor and homelessness researcher at the University of California-San Francisco.

“Now you’re going to see disconnections from those case managers and housing navigators and people just losing touch in the chaos and the shuffle,” she said. “What’s worse, though, is we are going to lose the trust that is so essential to getting people to take their medications or stop their drug use and, ultimately, getting people into housing.”

Kushel said the ruling would make homelessness worse. “Just having fines and jail time makes it easier for a landlord to reject you for housing,” she said.

At the same time, Americans are increasingly frustrated by encampments spreading into neighborhoods, ringing public parks, and popping up near schools. The spread is marked by more trash, dirty needles, rats, and human excrement on sidewalks.

Local leaders across deep-blue California welcomed the decision from the conservative majority, which will allow them to fine and arrest homeless people, even if there’s nowhere for them to go. “The Supreme Court today took decisive action that will ultimately make our communities safer,” said Graham Knaus, CEO of the California State Association of Counties.

Newsom, a Democrat who leads a state with nearly 30% of the nation’s homeless population, said the decision gives state and local officials “the definitive authority to implement and enforce policies to clear unsafe encampments from our streets,” ending legal ambiguity that has “tied the hands of local officials for years and limited their ability to deliver on common-sense measures to protect the safety and well-being of communities.”

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

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

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Esas fueron las reacciones de algunas de las 20 víctimas de disparos del desfile del Super Bowl de los Kansas City Chiefs que el jueves 27 de junio recibieron $1.2 millones del fondo #KCStrong, con pagos individuales que van desde $22,000 hasta $100,000.

Chris Rosson, presidente y CEO de United Way of Greater Kansas City, dijo que los pagos ayudarán a estos sobrevivientes, reconociendo al mismo tiempo que la violencia con armas de fuego, como el tiroteo del 14 de febrero, ocurre todos los días en Kansas City, en general en comunidades de bajos ingresos que ya están desprovistas de recursos.

“Al lanzar el fondo, era importante para nosotros apoyar en primer lugar a las víctimas directas de la violencia de ese día, pero también proporcionar recursos financieros críticos a las organizaciones de prevención y respuesta a la violencia, de apoyo de salud mental y a los que proporcionan primeros auxilios”, dijo.

El tiroteo cerca de Union Station, hacia el final de desfile, dejó 24 personas heridas y una muerta: Lisa López-Galván, de 43 años, madre de dos hijos y popular DJ de música tejana.

Desde el tiroteo, algunas víctimas y sus familias han recibido facturas médicas por miles de dólares, por tratamientos en salas de emergencia, viajes en ambulancia, atención médica continua por las heridas de bala o consejería de salud mental.

Algunas todavía están luchando por volver al trabajo y dependen de una confusa red de asistencia de cuentas de GoFundMe y un grupo de iglesias locales.

Erika Nelson, cuya hija de 15 años, Mireya, recibió disparos en la barbilla y el hombro, dijo que el dinero de United Way es una bendición, pero que su hija todavía lucha con las heridas físicas y emocionales de la violencia.

“No me importa cuánto dinero sea. Podría ser un millón de dólares. Podrían ser mil millones. Nunca va a cambiar lo que mi hija vive todos los días”, dijo Nelson. El fondo #KCStrong fue lanzado por United Way el 15 de febrero, impulsado por una primera donación de $200,000 hecha por los Chiefs, la NFL y la familia Hunt, dueña del equipo. La Kauffman Foundation y una persona anónima fueron listados como los principales donantes, con $250,000 cada uno.

Los fondos no tienen restricciones, por lo que pueden usarse para facturas médicas, fondos universitarios para los niños heridos durante el desfile por la victoria de los Chiefs, o cualquier otra cosa que las familias necesiten.

Rosson dijo que el grupo creía que las víctimas y las personas más cercanas a ellas deberían decidir cómo gastar mejor el dinero. “Dar fondos sin restricciones directamente a esas víctimas de disparos verificadas les permite tomar las decisiones que son adecuadas para ellos y su familia, y el camino que seguirán”, dijo.

Kera Mashek, directora de comunicaciones del United Way local, dijo que el dinero cae bajo el paraguas de asistencia basada en necesidades y no estará sujeto a impuestos.

United Way trabajó con la Oficina del Fiscal del condado de Jackson, Missouri, para verificar a las víctimas. Veinte de las 24 víctimas recibieron compensaciones porque dos no aplicaron y un tercero rechazó la donación, dijeron funcionarios de United Way. A una cuarta víctima, no identificada, se le negaron los fondos porque está conectada al caso criminal, según Jean Peters Baker, fiscal del condado de Jackson.

No se nombró a ninguna de las víctimas en el anuncio del 27 de junio.

Emily Tavis dijo que se sentía “más que bendecida y abrumada por el agradecimiento” al recibir la asistencia. Tavis, su pareja, Jacob Gooch Sr., y su hijastro Jacob Gooch Jr. recibieron disparos en el desfile.

“Es un gran alivio poner las facturas al día”, dijo Tavis. Ella ya había comenzado a pagar cuentas de tarjetas de crédito con su parte del pago.

Antonio Arellano, cuyo hijo de 11 años, Samuel, recibió un disparo en el costado, dijo que el dinero fue una “gran ayuda” para la familia. Dijo que Samuel espera unas vacaciones en Florida y boletos de temporada para ver jugar a los Chiefs. Pero estar en grandes multitudes aún es difícil para Samuel, por lo que Arellano dijo que intentarán ir a un juego primero para ver cómo va.

James Lemons, a quien recientemente le extrajeron la bala alojada en su pierna, dijo que agradecía la ayuda y que se siente bendecido, pero también siente que el dinero ya se ha ido. Quiere devolver la ayuda que la familia recibió tras el tiroteo, incluido el dinero que pidió prestado para ayudarlos a mudarse luego que el dueño de la casa que alquilaban la vendiera poco después del desfile.

Hasta ahora, tres adultos y tres menores han sido acusados por el tiroteo, junto con tres hombres que enfrentan cargos federales de tráfico de armas o de mentir a agentes del FBI.

Más de 80 personas fueron pisoteadas en el caos generado tras los tiroteos, dijo Baker, agregando que también están entre las muchas víctimas del ataque. Sin embargo, no recibirán dinero del fondo.

Las campañas como #KCStrong que surgen tras tiroteos masivos deben equilibrar la distribución del dinero de manera lo suficientemente amplia como para incluir a las personas directamente afectadas sin disipar los recursos disponibles, según Jeff Dion del Mass Violence Survivors Fund. Esta organización sin fines de lucro ha ayudado a comunidades de todo el país a distribuir este tipo de fondos.

Por ejemplo, OneOrlando Fund, que surgió tras el tiroteo en el club nocturno Pulse en 2016, hizo una gama de pagos, incluyendo $350,000 a las familias de cada una de las 49 personas asesinadas, pero también $25,000 a cada una de las 182 personas que estaban en la discoteca pero no resultaron físicamente heridas.

Ese fondo recaudó $29.5 millones en comparación con los $2 millones recaudados en Kansas City.

El fondo de $31.4 millones que se recolectó en Las Vegas en 2017 tras el tiroteo masivo en un concierto con 22,000 asistentes no incluyó pagos a personas que no habían sido heridas.

Cerca de un millón de personas fueron al desfile del Super Bowl en febrero. “Cuando estás manejando dólares reales, tienes que encontrar una manera de poder servir al mayor número de personas con la mayor cantidad de dinero”, dijo Baker.

“Así que creo que esas fueron probablemente algunas de las decisiones que tuvieron que tomarse en este caso, lo cual es difícil, duro, pero también necesario”.

Los grupos comunitarios que recibieron cada uno $59,410, son: AdHoc Group Against Crime; Boys & Girls Clubs of Greater Kansas City; Center for Conflict Resolution; Guadalupe Centers; Kansas City Metropolitan Crime Commission; KC Common Good; KC Mothers in Charge; Lyrik’s Institution; Newhouse Domestic Violence Shelter; Rose Brooks Center; Transition Zone; The Battle Within; Uncornered, y University Health.

Otros esfuerzos también han destinado dinero a los sobrevivientes del tiroteo del desfile del Super Bowl. Las cuentas de GoFundMe han recaudado $667,785. Un grupo basado en la fe, llamado “The Church Loves Kansas City”, recaudó $184,500 y hasta ahora ha destinado más de $50,000 a gastos funerarios, procedimientos médicos, asesoramiento y gastos domésticos, dijo Gary Kendall, uno de sus líderes.

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 HostJulie RovnerKFF 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.In what will certainly be remembered as a landmark decision, the Supreme Court’s conservative majority this week overruled a 40-year-old legal precedent that required judges in most cases to yield to the expertise of federal agencies. It is unclear how the elimination of what’s known as the “Chevron deference” will affect the day-to-day business of the federal government, but the decision is already sending shockwaves through the policymaking community. Administrative experts say it will dramatically change the way key health agencies, such as the FDA and the Centers for Medicare & Medicaid Services, do business.

The Supreme Court also this week decided not to decide a case out of Idaho that centered on whether a federal health law that requires hospitals to provide emergency care overrides the state’s near-total ban on abortion.

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

PanelistsJoanne KenenJohns Hopkins University and Politico@JoanneKenen Read Joanne's articles.Victoria KnightAxios@victoriaregisk Read Victoria's stories.Alice Miranda OllsteinPolitico@AliceOllstein Read Alice's stories.Among the takeaways from this week’s episode:

• In 1984, the Supreme Court ruled broadly that courts should defer to the decision-making of federal agencies when an ambiguous law is challenged. On Friday, the Supreme Court ruled that the courts, not federal agencies, should have the final say. The ruling will make it more difficult to implement federal laws — and draws attention to the fact that Congress, frequently and pointedly, leaves federal agencies much of the job of turning written laws into reality.
• That was hardly the only Supreme Court decision with major health implications this week: On Thursday, the court temporarily restored access to emergency abortions in Idaho. But as with its abortion-pill decision, it ruled on a technicality, with other, similar cases in the wings — like one challenging Texas’ abortion ban.
• In separate rulings, the court struck down a major opioid settlement agreement, and it effectively allowed the federal government to petition social media companies to remove falsehoods. Plus, the court agreed to hear a case next term on transgender health care for minors.
• The first general-election debate of the 2024 presidential cycle left abortion activists frustrated with their standard-bearers — on both sides of the aisle. Opponents didn’t like that former President Donald Trump doubled down on his stance that abortion should be left to the states. And abortion rights supporters felt President Joe Biden failed to forcefully rebut Trump’s outlandish falsehoods about abortion — and also failed to take a strong enough position on abortion rights himself.

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

Julie Rovner: The Washington Post’s “Masks Are Going From Mandated to Criminalized in Some States,” by Fenit Nirappil.

Victoria Knight: The New York Times’ “The Opaque Industry Secretly Inflating Prices for Prescription Drugs,” by Rebecca Robbins and Reed Abelson.

Joanne Kenen: The Washington Post’s “Social Security To Drop Obsolete Jobs Used To Deny Disability Benefits,” by Lisa Rein.

Alice Miranda Ollstein: Politico’s “Opioid Deaths Rose 50 Percent During the Pandemic. in These Places, They Fell,” by Ruth Reader.

Also mentioned in this week’s podcast:

• Politico’s “Inside the $100 Million Plan To Restore Abortion Rights in America,” by Alice Miranda Ollstein.
• JAMA Network Open’s “Use of Oral and Emergency Contraceptives After the US Supreme Court’s Dobbs Decision,” by Dima M. Qato, Rebecca Myerson, Andrew Shooshtari, et al.
• JAMA Health Forum’s “Changes in Permanent Contraception Procedures Among Young Adults Following the Dobbs Decision,” by Jacqueline E. Ellison, Brittany L. Brown-Podgorski, and Jake R. Morgan.
• JAMA Pediatrics’ “Infant Deaths After Texas’ 2021 Ban on Abortion in Early Pregnancy,” by Alison Gemmill, Claire E. Margerison, Elizabeth A. Stuart, et al.

CreditsFrancis YingAudio producerEmmarie Huetteman Editor To hear all our podcasts, click here.

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

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

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President Joe Biden and former President Donald Trump, the presumptive Democratic and Republican presidential nominees, shared a debate stage June 27 for the first time since 2020, in a confrontation that — because of strict debate rules — managed to avoid the near-constant interruptions that marred their previous encounters.

Biden, who spoke in a raspy voice and often struggled to articulate his arguments, said at one point that his administration “finally beat Medicare.” Trump, meanwhile, repeated numerous falsehoods, including that Democrats want doctors to be able to abort babies after birth.

Trump took credit for the Supreme Court’s 2022 decision that upended Roe v. Wade and returned abortion policy to states. “This is what everybody wanted,” he said, adding “it’s been a great thing.” Biden’s response: “It’s been a terrible thing.”

In one notable moment, Trump said he would not repeal FDA approval for medication abortion, used last year in nearly two-thirds of U.S. abortions. Some conservatives have targeted the FDA’s more than 20-year-old approval of the drug mifepristone to further restrict access to abortion nationwide.

“The Supreme Court just approved the abortion pill. And I agree with their decision to have done that, and I will not block it,” Trump said. The Supreme Court ruled this month that an alliance of anti-abortion medical groups and doctors lacked standing to challenge the FDA’s approval of the drug. The court’s ruling, however, did not amount to an approval of the drug.

CNN hosted the debate, which had no audience, at its Atlanta headquarters. CNN anchors Jake Tapper and Dana Bash moderated. The debate format allowed CNN to mute candidates’ microphones when it wasn’t their turn to speak.

Our PolitiFact partners fact-checked the debate in real time as Biden and Trump clashed on the economy, immigration, and abortion, and revisited discussion of their ages. Biden, 81, has become the oldest sitting U.S. president; if Trump defeats him, he would end his second term at age 82. You can read the full coverage here and excerpts detailing specific health-related claims follow:

Biden: “We brought down the price [of] prescription drug[s], which is a major issue for many people, to $15 for an insulin shot, as opposed to $400.”

Half True. Biden touted his efforts to reduce prescription drug costs by referring to the $35 monthly insulin price cap his administration put in place as part of the 2022 Inflation Reduction Act. But he initially flubbed the number during the debate, saying it was lowered to $15. In his closing statement, Biden corrected the amount to $35.

The price of insulin for Medicare enrollees, starting in 2023, dropped to $35 a month, not $15. Drug pricing experts told PolitiFact when it rated a similar claim that most Medicare enrollees were likely not paying a monthly average of $400 before the changes, although because costs vary depending on coverage phases and dosages, some might have paid that much in a given month.

Trump: “I’m the one that got the insulin down for the seniors.”

Mostly False. When he was president, Trump instituted the Part D Senior Savings Model, a program that capped insulin costs at $35 a month for some older Americans in participating drug plans.

But because it was voluntary, only 38% of all Medicare drug plans, including Medicare Advantage plans, participated in 2022, according to KFF. Trump’s plan also covered only one form of each dosage and insulin type.

Biden points to the Inflation Reduction Act’s mandatory $35 monthly insulin cap as a major achievement. This cap applies to all Medicare prescription plans and expanded to all covered insulin types and dosages. Although Trump’s model was a start, it did not have the sweeping reach that Biden’s mandatory cap achieved.

Biden: Trump “wants to get rid of the ACA again.”