August 05, 2026
Rose
The modern health care system requires the work of caregiving to fall to whoever else lives in a household — even if they’re kids.
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August 05, 2026
Rose
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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 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.
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.
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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- August 04, 2026
- Rose
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The program’s spending on the therapy has quintupled since 2021, far outstripping the growth in diagnoses and raising concerns about overprescribing and fraud.
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- August 04, 2026
- Rose
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More than 900 people in Washtenaw County, Michigan, have been sickened with cyclosporiasis since mid-June. Linda Kim, a public health nurse, has called more than 100 of them. Almost everyone has said the same thing: It’s excruciating, and one of the worst illnesses they’ve experienced.
But on a Wednesday in July, she called one man who said he wouldn’t mind having it again, actually.
“You’re enjoying the weight loss?” Kim said, laughing as she took notes in a small conference room at the Washtenaw County Health Department building, just outside Ann Arbor. “Well, I’m glad to hear that. At least you got something good out of it!”
Normally, Kim’s supposed to be working downstairs in the clinic, where families wait in gray plastic chairs in the lobby for free or low-cost immunizations. But she hasn’t been there in months.
In March, Kim was transferred to a different department to help deal with a measles outbreak that sickened seven people in the county, five of them children. It was an all-hands-on-deck situation; everyone worked overtime. The state issued an advisory urging families in Washtenaw and surrounding counties to get babies 6 months or older vaccinated ahead of schedule, if possible.
The contact-tracing calls for measles could be contentious, Kim said. People were suspicious, asking her how she knew they had tested positive, or why they should give her any information.
“People were like, ‘Oh, you’re just trying to restrict my life,’ or ‘You’re just trying to get information out of me and get me in trouble,’” she said. “It’s like, no, we’re actually not doing that at all.”
As she tried to explain to them, tracing the spread of the highly contagious virus and publicizing possible exposure sites was an effort to “keep it contained, so it doesn’t become something huge.”
The county’s measles outbreak ended in late May. Then in June, reports of cyclosporiasis cases started pouring in — more than 11,000 so far in Michigan, including two deaths. Both people who died had “significant underlying health conditions that may have been impacted by cyclosporiasis and dehydration,” the state health department said on its website Aug. 3. Health officials aren’t providing more details, department spokesperson Lynn Sutfin said in an email, but are stressing that cyclosporiasis generally isn’t life-threatening and that deaths from it are uncommon in the U.S.
Kim said the cyclosporiasis surveillance has been very different from her experience with the measles outbreak. Now, people seem eager to divulge even the most graphic details, such as “pooping their beds, and, like, putting down towels and it’s not enough.”
Since she’s a nurse, such confessions don’t faze her, she said. Still, staffers have hundreds of these calls to make, so they try to keep each conversation under an hour.
But foodborne illness investigations are complex. Especially for this parasite, cyclospora. Symptoms can take as long as two weeks to appear after people have eaten contaminated food. And no one remembers what they ate two weeks ago, public health staffers said.
The interview process can be extremely detailed. Kim and her colleagues ask people to pull up their restaurant receipts, scroll through purchases on their grocery store apps, even try to recall details such as the exact brand of bagged salad mix they bought, or the type of taco they got at Taco Bell.
“Is that the crunchy one or the soft one?” Kim asked on a recent call, typing on a laptop decorated with cat and vaccine-themed stickers.
Kim has been working with the health department for two years, a period defined by federal funding cuts.
Laina Stebbins, a spokesperson for the Michigan Department of Health and Human Services, said the Trump administration’s sweeping cuts to public health grants eliminated a contract between the state health department and 44 of the state’s 45 local departments that funded 123 full-time employees.
Those cuts also affected the state’s disease surveillance labs, “reducing funding for equipment maintenance contracts, data modernization, and the ability to innovate laboratory processes during emerging disease response,” Stebbins said.
Some of that funding was restored after Michigan won a temporary restraining order against the Trump administration. But Washtenaw’s health department still had to scale back some disease surveillance and outbreak response work. Currently, employees who leave or retire aren’t replaced, except for those on the nursing team, which is hiring but still understaffed.
The county’s Health Equity Council, which aims to reduce health disparities, including in mental health, was shuttered suddenly in early 2025. Nearly a year later, it resumed its work, with funding at least through this September.
An employee from the Centers for Disease Control and Prevention had been stationed at the department. During the funding chaos, the worker was fired, then rehired, then furloughed.
The federal response to cyclosporiasis has felt frustratingly slow, according to Christina Zilke, a nursing supervisor at the Washtenaw health department.
“It took them forever to say that this was lettuce, and fast-food restaurants were taking it off the shelves before the CDC ever said what it was,” she said.
During a July 14 press call, the deputy director of the CDC’s Division of Foodborne, Waterborne, and Environmental Diseases, Gwen Biggerstaff, said it’s not unusual for it to take a long time to identify a specific source for cyclosporiasis — if it’s identified at all. That’s partly due to the lag time between exposure and the appearance of symptoms, and the complexity of tracing this particular parasite.
Meanwhile, Zilke’s been stocking the coffee station and bringing in pizza, trying to keep up staff morale. It’s not a reward, she said. “It’s more like: ‘Here’s some food for survival. Here’s a break so you don’t quit.’”
Kim, for her part, remains enthusiastic about the job but said it’s been a surreal introduction to a public health career — first measles, now cyclospora.
“If nationally they don’t know what’s going on, how are we locally expected to know what’s going on?” she said. “And also just frustrating to be, like, ‘Wow, I don’t think even our government knows how important public health is.’”
But there’s no time to dwell. She has to move on to the next call, as soon as she can wrap up this one. She gives each person her work number, so people can call or text with any follow-up questions.
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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- August 03, 2026
- Rose
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No medications were affected, but if new prevention items are not procured, aid groups fear a surge in new infections next year.
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- August 03, 2026
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Amanda DeSimone-Shabrack relies on a home healthcare aide to help her high-needs autistic 12-year-old son. Virginia’s Medicaid program covers the assistance, enabling her to work as both an education technology specialist and a professor, run errands, and keep Mason in the home.
That could change. In June, the Department of Justice issued a legal opinion saying federal disability rights laws don’t require states to provide services that allow people with disabilities to remain in their homes rather than institutions.
It’s a sharp reversal from 1999, when a landmark Supreme Court ruling held that unjustified institutionalization constituted discrimination under the Americans with Disabilities Act. Previous administrations have relied on that ruling to enforce civil rights for disabled people, but the Trump administration says that long-held interpretation is wrong.
Advocacy groups say legal protections for about 40 million adults and 5 million children who have disabilities could be undermined, and they worry that the new interpretation may herald a return to forced institutionalization.
The stage is also now set for a legal fight between advocates, states, and the federal government. Some states with ongoing lawsuits challenging disability rights requirements are already citing the DOJ opinion in hopes it will help them prevail.
In a case in Texas, for example, some Republican-led states are arguing that a rule instituting a 1973 civil rights law that led to community and home integration of people with disabilities is costly and infringes on states’ rights.
People like DeSimone-Shabrack are especially worried because, they say, the opinion follows a spate of White House and Republican-led initiatives that have already begun eroding hard-won protections for people with disabilities.
“I’m worried. Am I going to have to put him in an institution, and what’s that going to be like for him?” said DeSimone-Shabrack, whose personal home care help was recently reduced from 30 to 18 hours a week by the state. “As he gets older, am I going to be able to care for him without this support?”
The Department of Health and Human Services remains steadfast in enforcing federal civil rights laws, agency spokesperson Emily Hilliard said in an email.
“Our commitment to ensuring that individuals with disabilities are treated with dignity, afforded equal opportunity, and are able to meaningfully access community services remains unchanged,” she said.
But advocacy groups say the DOJ opinion could have sweeping repercussions. The opinion doesn’t change existing law, but advocates worry that HHS and the DOJ could begin rescinding guidance and regulations that mandate integration for people with disabilities.
They’re concerned that agencies will stop enforcing disability laws that ensure people aren’t unnecessarily institutionalized. HHS, for example, has historically investigated disability discrimination claims at hospitals and in states that get federal funding, enforcing compliance with home and community integration through voluntary agreements. Disability rights experts say those agreements could now be imperiled.
And some states facing financial pressures may roll back Medicaid services that enable people with disabilities to stay in their homes and communities — a trend that’s already happening following last year’s passage of the One Big Beautiful Bill Act, which cuts a projected $900 billion-plus from the safety net program over a decade.
Democrats are seizing on the opinion, which was released in a DOJ memo, to portray President Donald Trump and Republicans as a threat to people with disabilities. Sen. Tammy Duckworth (D-Ill.) and other Senate Democrats led the introduction of a resolution calling on the DOJ to rescind the opinion.
“The Trump Administration’s memo is an outrageous attack on the rights and independence of the disability community,” Duckworth said in a statement.
The DOJ didn’t return emails seeking comment.
According to the DOJ’s interpretation, regulations that give disabled people the right to demand certain services for daily living — bathing, mental health counseling, and financial budgeting help, for instance — and that require states to extend community-based services to mentally disabled individuals are unlawful, a view the agency acknowledged “is out of step with the common understanding of that decision within the federal courts.”
States may have legitimate reason to treat mentally disabled people in institutions, “including resource constraints, capacity limitations in community-based facilities, and safety concerns for both the patient and the community,” the memo reads.
The Supreme Court case, Olmstead v. L.C., has long shaped federal policy. And while it remains to be seen how courts will respond to the DOJ, some states seeking to curtail disability protections see the opinion as significant.
Consider the 2024 lawsuit in federal court in the Northern District of Texas by Republican-led states arguing that an HHS rule about the integration mandate is unlawful. The lawsuit began with broader claims and 17 state plaintiffs. Following significant advocacy from the disability community, only Texas, Alaska, and Florida remain.
Following the new DOJ interpretation, the states filed documentation to inform the court about the memo as a new and relevant development. Similar documentation citing the memo has been filed in disability rights cases in Florida and New Hampshire, according to The Arc of the United States, a disability advocacy group.
Advocates for people with disabilities say the speed at which plaintiffs are citing the opinion underscores how it may be used to justify the erosion of protections.
“The administration’s attempt to dismantle decades of progress in community integration is alarming and inconsistent with federal disability rights laws and Supreme Court precedent as well as the critical enforcement work of prior administrations,” said Shira Wakschlag, senior executive officer of legal advocacy and general counsel at The Arc.
Forced institutionalization led to human rights violations, segregation, and a eugenics movement in the late 19th and early 20th centuries that included involuntary sterilization.
Exposure of the abuses, legal battles, and an independent living movement caused a major shift toward integration. Fewer than 1% of people with intellectual or developmental disabilities lived in state-run facilities in 2021, down from almost 30% in 1967, according to data from the University of Minnesota’s Residential Information Systems Project, which maintains metrics on such long-term services and supports.
The Trump administration has already taken steps to reverse that trend, advocates say.
Trump signed an executive order last year that addresses homelessness by expanding involuntary treatment and institutionalization, reversing a “housing first” approach championed by the Biden administration.
Much of the special education program office is moving from the Department of Education to HHS, raising concerns among advocates that the administration is reverting to a view that disabilities are a medical issue to be fixed rather than differences that can be accommodated.
And cuts in federal funding for Medicaid, a federal-state insurance program for people with low incomes or disabilities, also portend fewer resources and services. States have responded by reducing some optional benefits such as home health aides and support. In addition, qualifying for an exemption from the program’s work requirements, which take effect Jan. 1 in most states, will pose significant hurdles for people with disabilities.
The June DOJ opinion, advocates say, could accelerate the shift and result in court rulings that chip away at disability rights.
“While it doesn’t overnight change the law, it’s very troubling and very dangerous,” said Zoe Brennan-Krohn, director of the Disability Rights Program at the American Civil Liberties Union. “It reflects a really deeply held disrespect for disabled people from this administration and a total lack of awareness of the lived experiences of people with disabilities who are living in their homes.”
Data shows there can be benefits to involuntary institutionalization. Relative to those voluntarily admitted, people with psychiatric illness who were involuntarily admitted “experienced greater improvements in symptoms and function,” according to a September 2024 review in Psychiatry, Psychology and Law, a peer-reviewed academic journal.
Deinstitutionalization has created new challenges. More hospitals have been forced to board people with psychiatric illness in emergency rooms because of a dearth of available beds. And moving people into home- and community-based living was supposed to be accompanied by an increase in outpatient care and treatment that never materialized, creating gaps in support.
But advocates for the disabled community say involuntary institutionalization strips people of their autonomy and poses a higher risk of neglect and abuse.
Jennifer Kucera, 57, of Cleveland, spent two years in a nursing home. She has spinal muscular atrophy, a genetic disease that kills motor neurons, leaving her able to move only part of her left arm and her head.
At the institution, she said, she felt bored and trapped and developed intense itching from scabies, which is caused by microscopic mites.
For more than a decade, however, she has lived in an apartment with the help of caregivers who come in the morning to get her dressed and ready and return to put her to bed. She works at a disability rights group, and her care is covered by Medicaid.
“The two years I lived in the nursing home, it was the most horrible time in my life,” said Kucera, who worries about the DOJ opinion on Olmstead. “My future is a shaking floor beneath me. With the stroke of a pen, they could get rid of everything I’ve built for myself.”
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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- August 02, 2026
- Rose
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Millions look to Nicole LePera for advice on how to achieve contentment and maintain healthy relationships. But her own story is complicated.
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- August 02, 2026
- Rose
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The amount is still far below what the U.S. spent previously on humanitarian and health aid, but resumes the flow of money for key efforts to fight malnutrition and disease.
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- August 01, 2026
- Rose
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Céline Gounder, KFF Health News’ editor-at-large for public health, discussed how children’s caffeine consumption is affecting their health on CBS News’ CBS Mornings on July 30.
KFF Health News senior correspondent Arthur Allen discussed the recent Anthony Fauci Senate hearing on CBS News 24/7 on July 29.
KFF Health News chief Washington correspondent Julie Rovner discussed the Fauci hearing on WBUR’s Here & Now on July 29. Rovner also discussed exceptional Affordable Care Act enrollment in New Mexico on KJZZ’s The Show on July 29.
KFF Health News national public health correspondent Amy Maxmen discussed the FDA potentially easing restrictions on peptide drugs on CBS News 24/7 on July 24.
KFF Health News Georgia correspondent Briah Lumpkins discussed the local impact of the loss of Environmental Protection Agency grant money on WUGA’s The Georgia Health Report on July 24.
- Click here to hear Lumpkins on The Georgia Health Report.
- Read Lumpkins’ “Public Health Improvements Stall Amid Trump’s DEI Crackdown.”
KFF Health News HawaiÊ»i correspondent Ashley Mizuo discussed the challenge of finding placement for prisoners after their compassionate release from detention on HawaiÊ»i Public Radio’s The Conversation on July 22.
- Click here to hear Mizuo on The Conversation.
- Read Mizuo’s “Severely Ill Prisoners Granted Early Release Are Left Stuck Behind Bars.”
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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- July 31, 2026
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A handful of former public health officials are campaigning for top statewide offices across the country, testing whether their experience with covid and other hot-button health issues will appeal to voters in November.
The officials, all Democrats, are running at a time when the Trump administration is reducing government funding for scientific research, restricting access to some vaccines, and making it more difficult for some Americans to obtain health insurance.
Shaughnessy Naughton, president of 3.14 Action, a political action committee that recruits Democratic candidates with science and health backgrounds, said it is unusual to see so many public health leaders running for office.
“But it’s not surprising given the moment we are living in, with an arsonist running HHS working to undermine the vaccine schedule and public health at large,” she said.
Health and Human Services Secretary Robert F. Kennedy Jr. is a longtime anti-vaccine activist who disparaged public health measures implemented during the pandemic, going as far as calling the covid vaccine the “deadliest vaccine ever made.”
Neither HHS nor the White House responded to requests for comment.
Several of the candidates benefit from name recognition built during the covid pandemic, political science scholars say, when daily news briefings from local health officials became must-see-TV for many citizens sheltering in place from the novel virus. But that cuts two ways.
While many Americans regarded public health officials as offering prudent advice and a steady voice, others criticized them for pushing school closures, mask mandates, and new, quickly created vaccines. The attacks have escalated under President Donald Trump, with Republicans targeting pandemic-era public health leaders such as Anthony Fauci with investigations and a former Fauci adviser even facing criminal prosecution.
National polls show healthcare is top of mind for many voters this year, with Democrats most worried about costs and Republicans about fraud. But that’s no guarantee of victory. Nirav Shah, an epidemiologist who led Maine’s top public health agency through the pandemic, lost a narrow Democratic primary in the state governor’s race in June.
Here are some of the public health officials on the ballot this year:
Xavier Becerra, Running for Governor in California
Becerra, who served as HHS secretary under President Joe Biden, is the highest-ranking former health official running this cycle. He won a crowded and expensive open primary and now faces Republican Steve Hilton, a British-born former Fox News host, in the general election.
Mark Peterson, a public policy professor at the UCLA Luskin School of Public Affairs, said with the pandemic in the rearview mirror, any judgment voters may have about the federal government’s response is more likely to reflect on Biden rather than Becerra, who has no medical background and maintained a low profile as HHS secretary.
Leading the nation’s health department as the pandemic lingered, Becerra focused more on expanding access to the Affordable Care Act and Medicaid, overseeing record numbers of people enrolled in the publicly financed programs during his tenure. He did face criticism over the processing and placement of a massive influx of migrant children at the U.S.-Mexico border, as well as his agency’s response to a baby formula shortage brought on, in part, by major product recalls.
Becerra has said he now wants to be California’s “healthcare governor,” a mantle outgoing Gov. Gavin Newsom tried to claim upon taking office in 2019.
Becerra’s campaign did not respond to a request for comment.
Before becoming HHS secretary, Becerra served as California’s attorney general and sued the first Trump administration more than 100 times, leading a coalition of states against GOP efforts to gut the ACA. He also started a unit in his office focused solely on healthcare. During Becerra’s tenure, his office reached a $575 million antitrust settlement with the California hospital system Sutter Health, pursued pharmaceutical companies that delayed generic drugs, and helped block a Trump administration rule that let employers choose whether to cover birth control.
Voters often regard decades of experience in government as a negative, Peterson said. But for the job of running the nation’s most populous state and the world’s fourth-largest economy, he added, “I think there are a lot of people out there who would like to have somebody who actually has run a big enterprise.”
In televised debates, Becerra has said California should maintain state-funded Medicaid coverage for immigrants without legal status. He is also a longtime supporter of implementing single-payer healthcare, though in recent interviews he has said it needs to be addressed at the federal level.
Amy Acton, Running for Governor in Ohio
Acton ran Ohio’s health department from February 2019 to June 2020.
During the first months of the pandemic, Acton appeared at daily news conferences with the state’s Republican governor, Mike DeWine, that were jokingly dubbed “Wine With DeWine.” She earned fans with her calm and positive demeanor while explaining her approach to keeping covid at bay.
But she also attracted critics with her recommendations to stay at home, mask up, and shut down some businesses to curb the virus’ spread. Protesters even showed up at her home.
Acton’s Republican opponent in the governor’s race, Vivek Ramaswamy, has labeled her “Dr. Lockdown” on social media. His criticism of her role in shutting down businesses could prove effective with the economy at the top of many people’s minds, said Christopher Devine, a University of Dayton political science professor.
“It’s a double-edged sword, because she also really upset some people,” Devine said of Acton’s time as the health director during the pandemic.
He said that is a tricky attack for Ramaswamy to pursue, though, because DeWine — still the sitting governor and a popular conservative figure — endorsed the covid measures Acton recommended, granting her emergency powers to sign the orders, and has since said he takes all responsibility for those actions.
For her part, Acton has done little on the campaign trail to highlight her time as the state’s public health director. Instead, she has focused more on healthcare affordability, highlighting the Trump-led cuts to Medicaid and the scaled-back subsidies for ACA plans that have resulted in thousands of people dropping coverage in the state.
“I hear from families across Ohio that healthcare costs are rising and they just can’t keep up,” Acton said in an emailed statement. “That’s why I will fight to protect and expand access, reduce the price of prescription drugs, forgive medical debt holding Ohioans back, and lower premiums.”
Abdul El-Sayed, Running for U.S. Senate in Michigan
El-Sayed — who ran the health departments in the city of Detroit and Wayne County, Michigan — is one of two leading Democratic candidates for Senate. The primary is Aug. 4.
El-Sayed, a progressive, is facing off against Haley Stevens, a four-term congresswoman. They are vying to run against Republican nominee Mike Rogers, a former congressman, for the Senate seat held by retiring Democrat Gary Peters.
From 2015 to 2017, El-Sayed ran the Detroit Health Department, which had been gutted and privatized as part of the city’s 2013 bankruptcy. In his role, he led efforts to test Detroit schools for lead in the wake of the Flint water crisis and provide free eyeglasses to children in public schools.
From 2022 until 2025, he ran the health department in Wayne County, the state’s most populous county, which includes Detroit. In that job, he initiated a program to retire medical debt for thousands of residents and make naloxone available in public areas to reverse the effects of opioid overdoses.
In an interview with KFF Health News, El-Sayed said his public health experience helped him become an effective communicator and challenge corporations and the role they play in healthcare.
“Politics have become overrun by big money and corporations, and my training and background in public health has taught me to think about that and push back against it,” he said.
El-Sayed, who did not practice medicine after completing his residency and is not licensed to do so, has faced criticism from some in his party for calling himself a doctor.
El-Sayed, who has endorsements from Sen. Bernie Sanders (I-Vt.) and U.S. Rep. Alexandria Ocasio-Cortez (D-N.Y.), supports “Medicare for All,” a policy favored by many progressives that would make more people eligible for the federal health program for people who are 65 and older or disabled.
David Dulio, a professor of political science at Oakland University in Rochester, Michigan, said that the broader economy, Trump’s tariffs, and trade are eclipsing healthcare this year as top concerns for voters in the state. But he added that “progressive stances such as Medicare for All are attractive in the Democratic primary electorate.”
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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- July 30, 2026
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The group of former health and national security officials warned that Americans will be more vulnerable to infectious disease threats.
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- July 30, 2026
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More people who lost coverage after congressional Republicans ended enhanced federal subsidies are now seeking care in emergency rooms and unable to pay bills.
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- July 30, 2026
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One of America’s most competitive gubernatorial races could settle a heated argument over whether private insurance companies should run Medicaid.
The race is in Iowa, whose Medicaid program has been plagued with controversy since 2016, when the state hired national insurance companies to manage billions of dollars’ worth of benefits.
That shift was made by then-Gov. Terry Branstad, a Republican. With his executive order, Iowa joined most other states in privatizing the management of Medicaid, which covers healthcare for more than 67 million Americans with low incomes or disabilities.
The arguments have resurfaced this year during the competition to replace Republican Gov. Kim Reynolds, who was Branstad’s protégé and continued contracting with private companies to manage Medicaid benefits. Zach Lahn, the Republican candidate to succeed the retiring governor, supports the practice. Rob Sand, the Democratic candidate, wants to end it.
“It’s been a disaster,” said Sand, Iowa’s state auditor. “The number of complaints has been catastrophic.”
Pros and Cons
Supporters of privatization say the insurers, known as managed-care organizations, make Medicaid more effective and efficient. Critics contend the companies pad their profits by denying payment for crucial health services and by shortchanging agencies and professionals who provide care.
Iowa is among 41 states, plus the District of Columbia, that contract with outside companies to run at least part of their Medicaid programs. Overall, private insurers manage the benefits of more than three-quarters of Medicaid patients. Connecticut is the only state that has fully reversed course after privatizing its Medicaid system.
Sand has criticized privatized Medicaid for years. As state auditor, he published reports alleging that the national insurers systematically deny or delay payment for services to which Medicaid participants are entitled.
He has vowed not to renew state contracts with the three insurers managing care for more than 600,000 Iowans on Medicaid, which is jointly financed by the state and federal governments. He would resume having state employees review and pay bills from clinics, hospitals, and other healthcare providers.
Lahn told KFF Health News that Sand’s pledge to resume state administration of Medicaid “is the exact wrong idea.”
Lahn is a former activist for Americans for Prosperity, a national pro-business group affiliated with the Koch family. He contends that state governments and Medicaid participants benefit when insurers compete to serve them.
“There are very few things that government does more efficiently than the private sector,” he said.
Lahn, who is a businessman and farmer, emphasized that state officials should strictly enforce contract requirements, ensuring that the insurers treat Medicaid recipients fairly and make prompt payments to care providers. He also said he would bar insurers from using artificial intelligence systems to determine whether to pay for medical claims under Medicaid. “Iowans deserve to have a human looking at their case,” he said.
Sand said in a recent interview that he doesn’t want Iowa to fully return to a “fee-for-service” Medicaid system, in which hospitals, clinics, and other healthcare agencies would effectively be paid piecemeal for whatever services they provided. Instead, he said, state employees should take over operation of a managed-care system, in which administrators review services to help ensure Medicaid participants receive what they need without wasting public money on ineffective services.
A few months ago, Republicans controlling the Iowa Legislature considered a bill to require the state to have a privately managed Medicaid system. That proposal would have blocked future governors from unilaterally shifting back to public management of the program. But the bill failed to pass.
Sand, a former assistant state attorney general, said he is confident he would have legal authority as governor to stop contracting with private Medicaid managers, although he cautioned that the transition would be complicated and could take time.
A Toss-Up Race
National political observers say the Iowa governor’s race could go either way.
This June, Lahn won an underdog primary campaign to beat a sitting congressman backed by President Donald Trump. Lahn gained Trump’s endorsement after winning the Republican primary. He is a vocal supporter of the Make America Healthy Again movement, led by Health and Human Services Secretary Robert F. Kennedy Jr., which aims to improve Americans’ diets and reduce environmental poisons.
Sand noted that Lahn’s past political activism included a failed 2014 attempt to defeat a proposal to cover more people under Montana’s Medicaid program.
Lahn said that at the time he worried the federal government would reduce how much money it would contribute to such Medicaid expansions, leaving states to foot much of the bill. He said he also didn’t want to see public programs such as Medicaid giving benefits to adults capable of providing for themselves. But he said those concerns have been allayed, partly by the Trump administration’s moves to require millions of Medicaid recipients to prove they are working, volunteering, or going to school.
If elected governor, he said, he would not try to reverse Iowa’s expansion of Medicaid, which happened in 2014 under Branstad.
Branstad also is the governor who decided in 2016 to hire private insurers to manage Medicaid.
Branstad, who declined to comment for this article, did not need the legislature to approve his momentous decision. He weathered controversy over the change, including allegations that the companies systematically denied payment for care that people with disabilities needed to remain in their homes.
Andy Schneider, a Georgetown University researcher who studies health policy issues, said it’s understandable that many government leaders see an advantage in hiring private Medicaid management companies. Each state’s Medicaid program pays claims for hundreds of thousands or even millions of members, and administrators must scrutinize bills from thousands of hospitals, clinics, and other healthcare organizations. “That’s a heavy lift,” said Schneider, who worked in federal Medicaid administration when Barack Obama was president.
Schneider noted that Medicaid expenses are among the biggest parts of any state’s budget. The costs can vary dramatically year to year, he said, which is hard for legislators and governors to plan for. Management companies sign contracts for set amounts of money per enrollee, depending on people’s ages and health conditions. Managed-care companies say they can improve Medicaid members’ health and reduce expenses. But Schneider said outside researchers have been unable to confirm or disprove those claims.
Federal law gives states flexibility in how they run their Medicaid programs, including whether they hire private insurers to manage the programs. “Unwinding those arrangements might take a little time, but there’s no question they can do it,” Schneider said.
Connecticut ended its use of private insurers to run Medicaid in 2012. Minnesota legislators decided to contract only with nonprofit insurers, starting in 2025, and that state’s governor has talked about doing away with private management altogether.
Gary Jessee, a former Texas Medicaid director who helped transition that state’s program into managed care, noted that most Americans’ health coverage is managed by some kind of insurance company, whether they obtain it on their own or get it through a government or employer plan.
Jessee now helps run a health policy consulting company whose clients include Medicaid managed-care companies. He said states rarely talk about totally scrapping contracts with such companies. Instead, he said, states have options to change the contracts, including to increase oversight or limit profits.
Overall, Jessee said, managed-care companies help Medicaid enrollees obtain the services they need to stay healthy. But it’s hard to calculate how much money the companies save states, he said, because all healthcare costs have been rising, and new members of managed-care plans may at first use more services as the insurance companies encourage them to get regular checkups instead of waiting for emergencies.
Iowa’s Medicaid program is managed by three insurers: Molina Healthcare, Elevance Health subsidiary Wellpoint, and Centene subsidiary Iowa Total Care.
None responded to requests for comment for this article.
Catherine Gray of Des Moines helps run a Facebook page for families who use Iowa’s Medicaid system. Her adult son, John, is on Medicaid because of a disability. Gray said the managed-care companies have made it much harder for people to obtain services, including mental healthcare, dental care, and transportation to health appointments. Iowa’s shift to the private system was abrupt and chaotic, she said. “We know people have died,” she said.
Gray said she probably will vote for Sand for governor, even though she doesn’t agree with every nuance of his stance on Medicaid. She suspects many other Iowans who use the program will do the same. “They’ve really been put through the wringer for 10 years, and they’re exhausted.”
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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- July 29, 2026
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The Kentucky Republican has accused Dr. Anthony Fauci of funding research that triggered the Covid pandemic and lying about it to Congress — charges Dr. Fauci denies.
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- July 29, 2026
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Around the end of last year, Ronmel Rangel, 63, began to feel a familiar discomfort in his lower abdomen. Twenty-five years earlier, while living in his native Venezuela, he had undergone surgery to repair a hernia on the right side of his groin.
Now, the same pain had returned — on the left.
This time, Rangel was in the U.S. and lacked health insurance. In 2019, he moved to Portland, Maine, where one of his daughters lives.
As a green-card holder, he qualified to purchase health insurance through the Affordable Care Act marketplace. But he quickly realized that the premiums for someone his age were beyond his budget. He decided to go without insurance, even though it had been a priority for him.
Instead, Rangel signed up for a plan at a concierge practice where patients pay as little as $70 a month for services, including unlimited office visits and minor procedures such as stitches and biopsies.
But when Rangel was diagnosed with a hernia, surgery became unavoidable. Ben Hagopian, his primary care physician, helped him compile a list of hospitals and surgical centers to consider. Rangel has a PhD in management, a field he pursued while serving in the navy in Venezuela. Armed with that knowledge and a naturally inquisitive mind, he began researching prices.
His efforts paid off when the bill came.
The Medical Service
Rangel had what is called an inguinal hernia, which occurs when the contents of the abdomen bulge through a weak spot in the lower abdominal wall. The condition is relatively common, particularly among older adults.
In most cases, surgery is required to fix the muscle wall and can be performed as an outpatient procedure. There are three main surgical approaches to repair an inguinal hernia: open, laparoscopic, and robot-assisted. Studies have shown that the three approaches have similarly low rates of hernia recurrence and are safe and effective.
Rangel underwent an open repair, an approach often preferred by physicians for recurrent hernias. He said his operation lasted less than two hours, and he walked out of the surgical center shortly afterward.
The Bill
$2,900: The flat rate Rangel ultimately paid for his hernia repair at an outpatient surgery center in Maryland, including the surgeon’s fee and anesthesia. He said he also paid around $1,800 to travel to the surgery center from his home in Maine, including airfare, meals, and lodging for him and his wife.
The Billing Problem: No Insurance — But Time To Shop
Because Rangel did not have insurance, he had no protections from high costs — except time and his ability to shop for an acceptable price for his procedure.
Rangel’s first stop was a nonprofit hospital close to home. He scheduled a consultation with a surgeon with MaineHealth, the state’s largest health system, and received an estimate showing it would cost approximately $23,000 to repair his hernia laparoscopically.
Laparoscopic procedures generally cost more because surgeons use more advanced tools. Still, the average laparoscopic inguinal hernia repair costs nearly twice as much at a hospital as it does at an ambulatory surgery center for a patient covered by Medicare, which pays $5,280 for the hospital-based option.
“I wasn’t going to mortgage my life just to have surgery and spend the next 30 years paying off the debt,” said Rangel, now 64.
So, he kept shopping. He considered a surgical center in Oklahoma that was far cheaper, but he ultimately ruled it out because it was so far away. He also explored traveling to Universidad de los Andes in Santiago, Chile, where another of his daughters lives. There, his hernia repair would have cost about $7,000, but once he added thousands of dollars in travel expenses, that option no longer made financial sense.
Gerard Anderson, a professor who analyzes healthcare spending at the Johns Hopkins Bloomberg School of Public Health, said patients without health insurance are often the ones hit hardest by wide price variations.
A closer look at any hospital bill helps explain why. “Every hospital is different,” he said, “but generally about half of the total charge is the facility fee,” a charge added to hospital care to help cover overhead costs.
Anderson said hospitals often mark up prices far more than smaller facilities do.
Medical billing researchers say the price gap between hospitals and ambulatory surgery centers partially reflects the higher overhead costs of operating a hospital.
Hagopian, Rangel’s physician, acknowledged that hospitals have higher administrative expenses. “But that doesn’t explain the high costs.”
MaineHealth declined to comment to KFF Health News, directing questions about the hospital-based procedure’s cost to Jeffrey Austin, president of the Maine Hospital Association.
Austin said that, unlike surgery centers, hospitals must absorb the costs of providing “money-losing” services, such as behavioral healthcare and care for Medicaid patients. He added that revenue generated by large hospitals in a health system supports other facilities, improving access to care.
Hospital prices, which can vary widely, are also driven by negotiations with insurers and market concentration. For uninsured patients, those list prices can become the starting point for negotiations — or the full amount owed.
Anderson noted that standardized payment rates exist for Medicare and Medicaid but not for most privately priced medical services. “In the private sector, providers can charge whatever they want.”
The Resolution
Rangel has another daughter in Argentina, a son in Venezuela, and other family in Spain. But he decided to stop looking around the globe for a good price, because he finally found what he was looking for in Maryland.
In April, he traveled to the Affordable Hernia Surgery center in Rockville, where he said “an efficient, well-coordinated system” guided him through the entire process.
“I received professional and very human care,” Rangel said. He was fully recovered within two weeks, as his surgeon predicted, he said.
The surgery center charged Rangel a flat fee for his hernia repair. The added travel expenses for the two-day trip with his wife went toward airline tickets, transportation, meals, and one night in a hotel.
Rangel said he paid about $4,700 total.
Alan Kravitz, the surgeon who performed Rangel’s operation, said the price difference uninsured patients face compared with insured patients is far from fair. “In the predatory and strategic world of U.S. healthcare pricing, uninsured patients generally get charged more than providers would accept from Medicare or commercial insurance.”
Kravitz then pulled out an estimate another patient had received for an inguinal hernia repair from a different large health system. The price: $37,000.
The Takeaway
Without insurance, many patients are on their own to negotiate.
“With the help of their primary physicians, patients can dig into prices and compare their options to avoid falling into medical debt,” Rangel said.
That approach, however, is most feasible for elective procedures with several surgical options offering comparable outcomes.
Patients facing medical emergencies do not have the luxury of comparing prices before seeking care, though many hospitals offer cash-pay discounts or charity care for those paying without insurance.
Billing analysts say patients who do have time to shop should look beyond cost alone. They recommend checking the quality of hospitals and surgical centers by reviewing publicly available ratings and patient reviews. Research has found that higher prices do not necessarily translate into a better quality of care, but it’s also important to select a reputable care provider.
Comparison shopping for medical care can be time-consuming. But for patients facing elective procedures, the effort can pay off — sometimes saving thousands of dollars.
“This was a learning experience for me,” Rangel said, “and I hope it will be for other people, too.”
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, at 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!
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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- July 28, 2026
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The next foodborne illness outbreak could be much worse.
That’s the concern of food safety leaders across the U.S. who are raising alarms over federal cuts they say have made it harder to detect and stop the spread of foodborne illnesses, such as the recent outbreaks of cyclospora, which has sickened thousands in dozens of states. And they’re especially worried the next pathogen will be much more deadly.
Food safety in the U.S. is monitored by a piecemeal system of state and federal agencies. That network is in charge of detecting, investigating, and stopping outbreaks of foodborne illnesses. Key to the system is the Centers for Disease Control and Prevention’s FoodNet program, created after four children died from E. coli in hamburgers in the early 1990s. States participating in the program, officially called the Foodborne Diseases Active Surveillance Network, contact labs to get case data that can signal when a problem is emerging.
But in President Donald Trump’s second term, his administration has slashed billions of dollars in public health funding and fired thousands of workers at federal health agencies. It has also curtailed FoodNet, stopping the program’s mandatory tracking of cyclospora and five other pathogens that together kill hundreds of people in the U.S. each year.
“You’re basically allowing for outbreaks to continue without being figured out. Invariably more people will get sick,” said Bill Marler, a Seattle-area food safety lawyer and advocate who has filed lawsuits against Taco Bell on behalf of people who allege they were sickened by cyclospora after eating there.
Under the changes to the FoodNet surveillance system, the 10 participating states — meant to represent a cross section of the broader population — no longer have to report cases of listeria, for example. That bacteria kills as many as 30% of people who are diagnosed with it.
Complications from listeria infections can include convulsions, miscarriage, and sepsis that damages organs. It’s much more rare than the type of E. coli bacteria still required to be tracked by FoodNet, but almost 95% of people infected with listeria wind up hospitalized. Listeria infections result in an estimated 170 to 260 deaths each year, according to numbers from the CDC and the Food and Drug Administration.
“It’s very hard to identify listeria outbreaks,” said Neal Fortin, the director of the Institute of Food Laws and Regulations at Michigan State University. Seeing it cut from FoodNet’s mandatory surveillance “really does disturb me,” he said.
Thirty-three people died and a pregnant woman had a miscarriage in 2011 after consuming cantaloupe contaminated with listeria. The FDA identified the cause in less than two weeks.
States participating in FoodNet also no longer have to report illnesses caused by campylobacter, a bacteria often contracted from raw and undercooked poultry that afflicts an estimated 1.5 million people each year. The bacteria sickened about 60 people in Idaho this year in an outbreak linked to raw milk — a product Health and Human Services Secretary Robert F. Kennedy Jr. has championed, even though pasteurization kills harmful bacteria.
HHS denies that the changes to FoodNet or Trump administration staffing cuts have elevated the risk that future outbreaks will be harder to identify and stop.
“FDA investigators were not affected by staffing changes or force reductions, and the FY 2027 President’s Budget proposes a $33 million increase for food safety activities,” HHS spokesperson Emily Hilliard said in an email. And the CDC never stopped monitoring illnesses caused by cyclospora, she said.
The CDC has other, passive surveillance systems, but they rely on states to report problems.
“There’s no requirement of how long it takes them to do that,” said Barbara Kowalcyk, the director of the Institute for Food Safety and Nutrition Security at George Washington University.
And the FDA meets only a fraction of the number of inspections mandated by Congress. The FDA hasn’t met its mandated targets for domestic and foreign inspections since 2018, according to a report early last year by the Government Accountability Office.
Food safety inspections of manufacturers by the FDA plummeted from 10,641 facilities in 2011 to about 4,500 a decade later. The agency had 432 investigators for domestic and foreign inspections in 2024, according to a GAO report.
That was before the Trump administration cut 3,500 jobs at the FDA in a push to reduce federal spending.
Now, food safety leaders say the situation could get worse, because the Trump administration wants to push more routine food inspections to the states and further reduce the number of federal staffers that handle investigations and inspections.
State health departments are already overburdened from federal funding cuts and staffing shortages, forcing some to reduce or halt prevention programs so they can focus on more emergent concerns.
The cuts are being felt in Michigan, which has reported more than 7,000 cases of cyclosporiasis, the most of any state. The cyclospora parasite can cause frequent diarrhea that can last for days or even weeks, as well as abdominal pain, nausea, and fatigue.
The health department in Washtenaw County, Michigan, already pulled some staff off other work, such as immunizations and sexual health, to handle a recent measles outbreak that sickened seven people, including five kids. Now those same nurses are spending hours on the phone with hundreds of people with cyclosporiasis, trying to trace the source of their illness through weeks-old takeout receipts, bank statements, and recollections.
“We are starting to see the consequences of an underfunded public health system in 2026,” said Natasha Bagdasarian, Michigan’s chief medical executive. “Currently it’s cyclospora. Eventually, we are going to lose the ability to detect something else.”
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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- July 28, 2026
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More measles cases have been reported in the United States in the last two years than in all the years from 2000 through 2024 combined.
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- July 28, 2026
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The vast majority of cases begin in the fallopian tubes — and removing them can reduce the risk by nearly 80 percent.
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- July 27, 2026
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More light at the day’s end comes at a price: much later winter sunrises across much of the U.S. Scientists have documented consequences for public health and the economy.
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- July 27, 2026
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A tiny federal agency tasked with protecting the public from injuries caused by lawn mowers and coffeemakers is demanding that some of the nation’s biggest health systems turn over detailed, personally identifiable medical records of all patients who seek help at their emergency rooms.
The Consumer Product Safety Commission, responsible for tracking and issuing recalls of dangerous products sold in the U.S., began discreetly pressuring hospital executives this year to share personally identifiable health data with a private contractor. But hospital lawyers and other industry experts have questioned the agency’s authority to collect, its ability to safeguard such a swath of sensitive information, and whether it has followed the legal process to overhaul its surveillance system.
After KFF Health News asked the CPSC about the new system, the agency announced the program on July 21. Left unmentioned, however, is the alarm it has raised among hospital executives, as well as the nature and extent of the agency’s data demands.
In a stark departure from its product-focused mission, the agency’s goal is to obtain millions of Americans’ medical records from emergency room visits for most injuries, from a broken bone to a childhood vaccine reaction or even a suicide attempt, according to documents and emails obtained by KFF Health News, as well as interviews with five people involved or familiar with the discussions.
A CPSC official also insisted in the emails that the institutions provide all ER patients’ identifiable information — such as names, addresses, diagnoses, and other personal details — to the contractor, Konza Health, for analysis. In correspondence with hospital executives, Konza representatives described participation as “mandatory” or “required.”
As a condition of viewing the correspondence, KFF Health News agreed not to republish some of the emails it obtained.
The CPSC wants at least 100 hospitals to start sending detailed medical records by the end of this year, according to an internal memo.
“The whole thing is troubling,” said Sharona Hoffman, a professor of health law at Case Western Reserve University who noted that giving a private entity access to a sweeping collection of data will introduce risks to patient privacy. “If this company really is collecting identifiable information, that is worrisome for patients.”
The new project was launched amid upheaval at the traditionally independent agency, which is without a governing board since President Donald Trump fired the CPSC’s three Democratic board members. Nearly 1 in 5 career staffers left the CPSC in the first 16 months of the new administration, according to a KFF Health News analysis of federal workforce data.
The initiative also comes as the Trump administration has sought unprecedented access to millions of Americans’ medical records, with the Office of Personnel Management requesting federal workers’ sensitive health information and Health and Human Services Secretary Robert F. Kennedy Jr. using a private organization to collect more medical records for his studies on vaccines and autism.
Steve Roney, CPSC spokesperson, said in an emailed statement on July 10 that the CPSC is “modernizing” its surveillance system. Asked whether the CPSC will file complaints against hospitals that do not participate, he said only that while the previous system “operated as a voluntary program, the ability of hospitals to opt out limited the sample size and usefulness of the data.”
Roney also acknowledged that the agency had not yet notified the public, as “required by law.”
Federal law requires the agency to provide notice and a public comment period before requesting information from 10 or more entities, a step it has not taken despite plans for 100 hospitals to join the surveillance system. KFF Health News independently confirmed with over a dozen hospitals that they had been approached.
Federal public health authorities cannot legally mandate that private health data be reported. But CPSC officials have suggested publicly and privately that if hospitals decline to share data with the new surveillance system, they could be subject to strict penalties from a data-sharing regulation known as “information blocking.”
Yet some hospital executives say they are reluctant to share patients’ sensitive data because they’re concerned about a different violation — that of federal privacy law.
AI Takes Over
Dozens of ERs across the country already participate in the CPSC’s voluntary National Electronic Injury Surveillance System, or NEISS, through which trained hospital workers report injuries involving consumer products, almost always stripped of patients’ identifiable information. The system helps the CPSC identify products, such as baby loungers, toys, and household appliances, with a pattern of injuring consumers.
The new injury surveillance program goes much further.
At a toy industry trade event in February, acting CPSC Chairman Peter Feldman said the agency is “investing in AI-enabled workflows that improve the quality and quantity of injury surveillance data, while also building up digital infrastructure to handle a massive new volume of electronic health records.”
Konza Health, a Kansas-based organization that runs the state’s health data exchange, will automatically pull and analyze medical records of all patient visits from ERs nationwide. Konza won a five-year contract worth up to $15.9 million with the CPSC last fall.
In email correspondence with hospital technology officials, Konza Health President and CEO Laura McCrary also has described ERs’ participation as “required,” stipulating that they share patients’ records with identifying information.
McCrary told KFF Health News by email that the company is not using AI to process the records it receives, saying instead that Konza will use “advanced analytic parsing and filtering capabilities.” Roney, the CPSC spokesperson, did not answer questions about the use of AI.
For years, agency officials have discussed moving away from human contractors and automating NEISS to save time and money.
But without workers on-site, hospital staffers may no longer receive training to determine what clinical information is important to include for the CPSC. In short, the changes could dilute the quality of the product safety data the agency collects.
“They want to suck in as much data as possible, but I’m not sure how thoughtful they’re being about what is collected and what is actually needed by the agency,” said former CPSC chair Alexander Hoehn-Saric, one of the Democratic appointees Trump fired last year.
Wanted: Injuries From Vaccines and Stingrays
The CPSC’s new data collection appears to contradict its own 214-page operating manual, which instructs hospitals not to include identifiable information “such as names, birthdates, or addresses” when reporting cases.
The agency is supposed to receive patients’ identifying information only when needed for follow-up investigations, which happens in fewer than 1% of reported cases, according to the manual.
The CPSC has also historically limited the records it collects to minimize privacy violations in case of a data breach.
The risk is not hypothetical: From 2017 to 2019, the agency improperly released personal health information of around 30,000 people, a disclosure that a top Republican at the time called “concerning.”
Konza, however, will receive even more sensitive information on many more people. McCrary said in a statement that Konza will remove patients’ names, addresses, and medical information “not needed by CPSC” before sharing records with the agency.
Leaving a private organization to collect sensitive information introduces risks, including that it could be stolen or used for business purposes, said Hoffman, the Case Western professor.
“Very often, they will use information for marketing because now they’re going to know what conditions people have,” she said.
Roney said that its contract with Konza, which has not been made public, prohibits the organization from selling or marketing the data it collects.
The CPSC’s manual also identifies types of ER visits that should not be reported to the CPSC, which has jurisdiction over only certain consumer products. Excluded injuries are those caused by food, illegal drugs, medical devices, alcohol, or plants, as well as injuries that did not involve consumer products — such as a cut from a rock or broken bones from a fall on the ground — and suicide attempts by adults.
But in a contract offered to one hospital and reviewed by KFF Health News, Konza set no such limits on the information it would gather from ER records and said it would hold on to patient health information for at least 30 days.
In an email sent to hospital technology officials, McCrary wrote that Konza would provide the CPSC with records when a patient is treated in the ER for any of more than 10,000 conditions. The expansive list of diagnostic codes Konza provided in the email includes injuries that do not involve consumer products.
Child injuries resulting from “poisoning by” vaccines or contact with stingrays, neither of which is regulated by the CPSC, are included in the list.
A limited number of hospitals once shared deidentified data on all injuries — regardless of product involvement — through the NEISS using the Centers for Disease Control and Prevention’s injury-tracking program. But the CDC halted that data collection, after funding and staffing were cut last year, and has not restarted it.
Pressure on Hospitals
CPSC Chief Data Officer Elizabeth Puchek, who joined the agency late last year after engineering U.S. Citizenship and Immigration Services’ data system, has told hospitals in emails that they must seek an exemption from the program if they decline to share patients’ emergency room records with Konza.
The CPSC’s targeted outreach has included some of the nation’s largest urban and rural health systems, as well as small, publicly owned hospitals.
Staff members at Mary Greeley Medical Center in Ames, Iowa, said that Konza and federal officials told them their participation in the new program was mandatory. The hospital, which has long participated in NEISS, signed a new contract in April to share its ER records with Konza.
Yet the hospital is reevaluating its participation after being notified that the funds it received to participate in NEISS were “no longer available,” spokesperson Steve Sullivan said.
Several hospital executives, lawyers, and others have raised doubts about the CPSC’s claimed authority.
Harborview Medical Center spokesperson Susan Gregg said the Seattle hospital’s emergency room has “voluntarily submitted de-identified data for many years, but we are not obligated to report this information.”
In Boston, Mass General Brigham has declined to participate in the new program, with spokesperson Kelly Mitchell saying that “to protect patient privacy, we are unable to provide these medical records.”
Henry Ford Health in Detroit; St. Luke’s in Boise, Idaho; and Sanford Health based in Sioux Falls, South Dakota — which together handle over a million ER visits a year — are among the health systems that have been approached but not yet entered into an agreement with Konza, according to representatives. Several of the nation’s busiest hospital systems targeted for the program — including the Mayo Clinic in Minnesota, Yale New Haven Hospital in Connecticut, Nationwide Children’s Hospital and the Cleveland Clinic in Ohio, and Baylor Scott & White Health in Texas — declined to answer questions about whether they’re participating.
Hoehn-Saric, the agency’s former chairman, said he was surprised that the CPSC would insist that hospitals provide identifiable records from all emergency room visits.
“This idea that they can simply demand patient information from a hospital and that the hospital would provide it — I really don’t understand the basis for that,” he said.
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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