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  • Doctors increasingly see AI scribes in a positive light. But hiccups persist

    When Jeannine Urban went in for a checkup in November, she had her doctor’s full attention.

    Instead of typing on her computer keyboard during the exam, Urban’s primary care physician at the Penn Internal Medicine practice in Media, Pennsylvania, had an ambient artificial intelligence scribe take notes. At the end of the 30-minute visit, Urban’s doctor showed her the AI summary of the appointment, neatly organized into sections for her medical history, the physical exam findings, and an assessment and treatment plan for her rheumatoid arthritis and hot flashes, among other details.


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    The clinical note, which Urban could also review on the patient portal at home, was incredibly thorough, she said. It summarized all of her questions and concerns and the doctor’s responses. The scribe “made sure we didn’t miss anything,” Urban said.

    Ambient AI scribes are being hailed by physicians as a game changer that helps free them to focus on their patients rather than their computer keyboard. By releasing doctors from the onerous and time-consuming task of documenting what happens during every patient encounter, early studies show, AI scribes may help reduce physician burnout and after-hours “pajama time” catching up on work in the evening.

    The potential of AI to transform every aspect of the health care system — from patient care to clinical efficiency to medical innovation — is an area of intense focus, including by the Trump administration.

    Last January, President Donald Trump issued an executive order to remove barriers to American leadership in AI. Later in the year, a press release from the federal Department of Health and Human Services invited stakeholders to weigh in on how the department can accelerate the adoption of AI in health care.

    Several startup vendors in recent years have introduced ambient AI scribe products that can be integrated into electronic health records. EHR market leader Epic is piloting its own AI scribe technology, which it expects to release widely early this year, according to Jackie Gerhart, a family medicine physician who is chief medical officer and vice president of clinical informatics at Epic.

    Health tech experts estimate that a third of providers have access to ambient AI scribe technology. As adoption looks likely to grow rapidly over the next few years, many expect it to become more of a recruiting tool, a minimum requirement for incoming clinicians, who reports indicate are increasingly prioritizing work-life balance.

    “It’s part of keeping doctors happy,” said Robert Wachter, a professor and the chair of the Department of Medicine at the University of California-San Francisco, whose forthcoming book, A Giant Leap, explores how AI is transforming health care. “Health systems that initially might have done a hard-nosed return-on-investment calculation — many are softening on that and realizing that the cost of recruiting and retaining doctors is pretty high.”

    But many questions remain. Does the use of ambient AI scribes improve patient care and health outcomes? Will doctors use time they gain by employing an AI scribe to improve the quality of the time they spend with their patients or just boost the number of patients they see? To what extent will expanding the amount of detail available from a patient visit lead to bigger bills if the AI scribe is integrated with a coding app that optimizes provider charges?

    For now, these questions remain mostly unanswered.

    Urban said that the AI scribe didn’t change her experience as a patient very much. Typically, after a patient gives verbal permission, the AI scribe records the visit on a phone and organizes the conversation into the structure of a clinical note, filtering out small talk that isn’t pertinent to the medical visit but incorporating relevant details about a family member’s recent cancer diagnosis, for example. The scribe’s note is often then integrated into the provider’s EHR. The doctor later reviews the note and signs off on it.

    Even though the visit may not feel very different to patients, some clinicians report that ambient AI scribes are changing patient encounters in unanticipated ways.

    “Now, when I’m doing a physical exam, I have to say what I’m doing and what I’m finding out loud in order for the AI scribe to document it,” said Dina Capalongo, Urban’s primary care doctor. “People find that very interesting,” she said.

    When Capalongo places her stethoscope over the carotid artery under a patient’s jaw, for example, she might say that she doesn’t hear a “bruit,” or vascular murmur, whose presence could indicate atherosclerosis. Patients have told her, “I never knew why a doctor would listen there,” she said.

    Saying things out loud for the AI scribe that would typically appear only in a clinical note can create its own set of challenges, particularly during sensitive physical exams. Doctors may feel it’s important to adjust their conversation accordingly.

    “Sometimes patients are anxious and scared and my saying things that they don’t understand or they may worry about during an uncomfortable examination does not help the situation and honestly is insensitive to what the patient is going through,” said Genevieve Melton-Meaux, a professor in the Division of Colon and Rectal Surgery at the University of Minnesota, who is also chief health informatics and AI officer at Fairview Health Services in Minneapolis. “I’ll keep that top of mind and make sure I record it” after the visit.

    “How we have conversations with patients about these tools is really important, in particular for maintaining trust and ensuring accurate information,” Melton-Meaux said.

    Studies have found that, across a range of measures such as completeness, timeliness, and coherence, the notes created by ambient AI scribes are generally at least as good as, and sometimes better than, traditional documentation, said Kevin Johnson, a pediatrician who is vice president for applied informatics at the University of Pennsylvania Health System.

    An ongoing concern is around AI “hallucinations,” in which false, sometimes fabricated information appears in an AI output.

    Kaiser Permanente, an early adopter of ambient AI scribe technology, provides it to more than 25,000 doctors, advanced practice providers, and pharmacists systemwide. It has found hallucinations to be “quite rare,” said Daniel Yang, an internist who is vice president of AI and emerging technologies at KP.

    But they happen. An AI-scribe-generated note, for instance, might say that the doctor planned to refer someone to a neurologist or to follow up in two weeks. The problem? The doctor might not have said that.

    “The technology is not perfect, and that’s why physicians are reviewing it,” Yang said. It’s learning from regular physician visits as it goes, he said. That’s why having a person check the work product is critical.

    Still, even such a “human-in-the loop” system is fraught, Wachter said. “Humans stink at maintaining vigilance over time,” he said.

    As the use of ambient AI scribes becomes routine, some clinicians worry that the technology will widen the divide between health care haves and have-nots.

    Large health systems are able to move forward with the technology, Melton-Meaux said. But what about critical access hospitals or small private practices? “There need to be more resources,” she said.

    Physicians’ enthusiasm for ambient AI scribes stands in sharp contrast to their negative reaction to electronic health record systems that have become widely adopted in recent years to replace paper charts.

    “During the last 10 years, when EHRs became a thing, we all became very grumpy, overworked data scribes,” Wachter said.

    The introduction of AI scribes makes physicians feel like technology is working for them rather than the other way around, health care AI experts said.

    And AI scribes are “training wheels” for more consequential adoption of AI in health care, Wachter said.

    To improve health care value and save costs, Wachter said, we need a system that makes it more likely that physicians will practice evidence-based medicine to order the right tests and prescribe the right medications.

    “It’s a few years away, but it’s all AI-dependent,” he said.

    Epic has introduced roughly 60 AI use cases for patients, clinicians, and administration, with over 100 more in the works.

    “It’s so much bigger than a scribe,” said Epic’s Gerhart. “It’s literally listening and acting in a way that tees things up for me so that I can take action.”


    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-NoDerivatives 4.0 International License.

    Michelle Andrews, KFF Health News

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  • Senior CDC officials resign after Susan Monarez’s ouster, citing concerns over scientific independence

    Four senior officials with the Centers for Disease Control and Prevention announced their resignations in recent days, citing what they described as growing political interference in the agency’s scientific work, particularly regarding vaccines.

    Two of them — Debra Houry, the CDC’s chief science and medical officer, and Demetre Daskalakis, who led the National Center for Immunization and Respiratory Diseases — stepped down on Wednesday, hours after the White House announced the firing of CDC Director Susan Monarez.


    Monarez, confirmed by the Senate in late July, was removed less than a month into her tenure. White House spokesperson Kush Desai said Monarez “was not aligned with the President’s agenda of Making America Healthy Again.” Monarez’s attorneys argue the dismissal is unlawful, asserting that only the president can remove a Senate-confirmed director.

    On Thursday, Jim O’Neill, the deputy secretary of the Department of Health and Human Services, was chosen to serve as acting CDC director, several White House officials confirmed to CBS News and KFF Health News. And in an internal email sent to CDC staffers that evening, HHS Secretary Robert F. Kennedy Jr. confirmed O’Neill as the acting CDC director without addressing Monarez’s departure.

    “I am committed to working with you to restore trust, transparency, and credibility to the CDC,” Kennedy told CDC employees, later writing that “President Trump and I are aligned on the commonsense vision for the CDC: Strengthen the public health infrastructure by returning to its core mission of protecting Americans from communicable diseases by investing in innovation to prevent, detect and respond to future threats.”

    Houry and Daskalakis said they had become increasingly uneasy about how vaccine policy was being handled. Both pointed to preparations for the Advisory Committee on Immunization Practices meeting, which recommends vaccine schedules.

    Houry said they feared “some decisions had been made before there was even the data or the science to support those. We are scientists, and that was concerning to us.”

    Daskalakis added that he was “very concerned that there’s going to be an attempt to relitigate vaccines that have already had clear recommendations with science that has been vetted,” which he warned could undermine public trust. “If you can’t attack access, then why not attack trust? And that’s what I think the playbook is,” he said.

    Both officials cited instances in which evidence reviews were altered or withdrawn. A CDC analysis of thimerosal, a vaccine preservative, was briefly posted before being taken down at the HHS’ direction. “If there’s something that doesn’t line up with the recommendations, then that information will be taken down, and it’s not there for the public to see for openness and transparency,” Houry said.

    The two also criticized what they described as a lack of direct communication between CDC scientists and HHS leadership. Daskalakis said his team was never invited to brief Kennedy on topics ranging from measles to COVID-19.

    When asked about Kennedy’s calls for “radical transparency,” Houry and Daskalakis described learning about changes to the COVID vaccine schedule for children not through internal channels but via social media.

    “The radical transparency manifested itself by a Twitter post, which is how Dr. Houry and I learned that the secretary had mandated the change in the children’s vaccine schedule for COVID,” Daskalakis recalled. “What is the background that led to that decision? And we were denied access to that information. So, I don’t think that that’s radically transparent,” Daskalakis said.

    CBS News and KFF Health News reached out to HHS for comment on some of the allegations made by Houry and Daskalakis but did not immediately hear back.

    Both officials said they had no jobs lined up when they resigned. Houry described the decision as an effort to raise the alarm about the direction of the agency.

    “For us, this was really sending out a bat signal,” Houry said. “We were the very senior scientists and career leaders at CDC. We thought this was the time to stand together and try to do what we could to raise the alarm around public health in our country.”

    Daskalakis said remaining at the CDC under current conditions would have made them complicit in what he called the “weaponization” of public health.

    “The safety has already been compromised. … We are flying blind in the U.S. already. If we continued … we would be complicit and would be facilitating the ability to go from flying blind to actively harming people,” he said.

    Houry emphasized the severity of the moment by noting that she left without a backup plan.

    “My leaving without a job was really just showing how dire the circumstances had become,” Houry said.

    Daskalakis said his decision was also shaped by his medical oath.

    “As a physician, I take the Hippocratic oath: First, do no harm. I am seeing ideology permeating science in a way that is going to harm children and adults. … I think we are seeing things that are happening that are making our country less prepared to be able to respond to the everyday pathogens … but also … to the next big thing.”

    Both also expressed concerns about their personal safety in the current climate.

    “The environment we live in … stoked by misinformation, especially from people considered by some to be health authorities, makes me worried for all of us in public health,” Daskalakis said. “I am concerned, but that’s part of our job … to be brave and continue to speak the truth even when we are outside of the CDC.”

    The resignations came weeks after a shooting outside the CDC’s Atlanta headquarters, which law enforcement linked to COVID misinformation.

    Houry said the White House response to the shooting was muted. Kennedy toured the site but later gave an interview expressing distrust of experts. “That was after the attack. It was based on COVID misinformation. So this is when we were trying to build trust,” she said.

    Daskalakis added that while Kennedy later described mass shootings as a public health crisis, he believed the secretary should address misinformation as a root cause. “The misinformation about the COVID vaccine — that has been documented by the Georgia Bureau of Investigation” as the reason for the CDC shooting. “I would really recommend that the secretary actually do take his own advice and actually address the core problem that led to that shooting as well,” he said.

    He also noted that the CDC’s gun violence prevention programs had been sharply reduced. “We talk about violence as a public health problem. It is, and there’s things we can do to prevent it. Unfortunately, the majority of that program, the staff are terminated,” he said.

    The firings and resignations have sparked calls for oversight. Independent Sen. Bernie Sanders of Vermont called for a bipartisan investigation, Democratic Sen. Patty Murray of Washington urged Kennedy’s removal, and Republican Sen. Bill Cassidy of Louisiana — who voted to confirm Kennedy’s appointment as HHS secretary — said the developments would “require oversight.”

    The events come as the FDA narrowed eligibility for updated COVID vaccines to older adults and people with risk factors for severe COVID.


    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. Subscribe to KFF Health News’ free Morning Briefing.

    This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NoDerivatives 4.0 International License.

    Céline Gounder, KFF Health News

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  • More local restrooms adding adult-size changing tables to help people with disabilities – WTOP News

    More local restrooms adding adult-size changing tables to help people with disabilities – WTOP News

    More public bathrooms across the country are adopting adult-sized changing tables for people who have disabilities and need a caregiver’s help.

    WTOP’s Kate Ryan speaks with Rachel London, executive director of the Maryland Developmental Disabilities Council, about more accessible bathrooms

    This article was republished with permission from WTOP’s news partners at Maryland Matters. Sign up for Maryland Matters’ free email subscription today.

    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.”

    A sign outside a bathroom at a rest stop near Pacific Junction, Iowa, designating the presence of an adult-size changing table. Photo by Jenny Pohl.
    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. ArizonaIllinoisMarylandMinnesota 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.

    A rest stop along Interstate 80 near Adair, Iowa, was one of the state’s first with an adult-size changing table. Without such tables, many travelers who wear diapers wind up being changed on bathroom floors, in cars, or even on the ground. (Tony Leys/KFF Health News)
    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 that 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.

    The adult-size changing table at a rest stop near Adair, Iowa, is 6 feet long and 32 inches wide. It can be raised and lowered and has a guardrail and safety strap to keep people from rolling off. It folds up to save space. (Tony Leys/KFF Health News)
    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.”

    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.

    Ciara Wells

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  • Bird flu Is bad for poultry and dairy cows. It’s not a dire threat for most of us — yet

    Bird flu Is bad for poultry and dairy cows. It’s not a dire threat for most of us — yet

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

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


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

    With that in mind, here’s what you need to know now.

    Who gets the bird flu?

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

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

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

    Is this the start of the next pandemic?

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

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

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

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

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

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

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

    What should be done?

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

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

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

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

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

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

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

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

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

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

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

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

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

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


    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.

    Subscribe to KFF Health News’ free Morning Briefing.

    Amy Maxmen, KFF Health News

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  • ‘It’s scary’: American families are homeless, unable to pay mega bills after Social Security benefits blunder. Lawmakers want to put a stop to it — will Congress come to the rescue?

    ‘It’s scary’: American families are homeless, unable to pay mega bills after Social Security benefits blunder. Lawmakers want to put a stop to it — will Congress come to the rescue?

    ‘It’s scary’: American families are homeless, unable to pay mega bills after Social Security benefits blunder. Lawmakers want to put a stop to it — will Congress come to the rescue?

    Social Security is meant to be a safety net for the disabled and retired. It delivers about $1.4 trillion in benefits to millions each year.

    However, the federal agency that runs it has been aggressively trying to claw back billions of dollars from those it now says it overpaid.

    Don’t miss

    An investigation by KFF Health News and Cox Media Group revealed that the Social Security Administration had demanded repayments from more than 2 million people a year. Beneficiaries were asked to repay amounts which sometimes reached tens of thousands of dollars.

    Georgia resident Denise Woods told WSB-TV Channel 2 Action News she was forced to live out of her car after receiving notice she had been overpaid Social Security benefits by an eye-watering $57,968.

    When Woods, who has lupus and congestive heart failure, couldn’t repay that amount, she was told her monthly checks of $2,048 would be withheld until it was enough to cover her debt.

    KFF and CMG say their reporting on the matter has triggered a congressional hearing, additional Senate oversight of the agency, an apology from the head of the SSA to Congress about understating overpayments, and an ongoing internal policy review.

    In November, two senators on the Senate subcommittee that oversees Social Security wrote a letter urging the SSA “to take additional action to reduce overpayments and prevent undue harm on the most vulnerable Social Security recipients when recovering overpayments.”

    In December, the Senate Finance Committee said it’s “going to watchdog Social Security’s overpayment program, and will meet with Social Security every month until it is fixed.” Chairman Ron Wyden wrote, “We were told in the past that Social Security was fixing the problem. That clearly has not been the case.”

    Under its new head Martin O’Malley the SSA has proposed using information from payroll data providers to reduce improper payments.

    The SSA’s overpayment problem

    In the fiscal year 2023 (Oct. 1, 2022 to Sept. 30, 2023), the SSA recovered over $4.9 billion in overpayments, but it ended the year with $23 billion of overpayments still uncollected.

    According to KFF Health News, the agency has admitted in the past that many overpayments were the result of errors by the government rather than the people — often elderly, poor or disabled — receiving the extra money.

    Those getting Social Security benefits typically spend their checks on critical living expenses and health care. They’re not stashing it away to cover unexpected four- or five-figure repayment bills from the SSA.

    For some, the repayment burden is life-altering. As part of its probe into the matter, WSB-TV Channel 2 Action News spoke with Nicole Eberhart at an extended-stay hotel, where the legally-blind mom is now living after losing her $1,700 monthly disability check from the SSA due to overpayments.

    Read more: No landlord? No problem! Explore hassle-free real estate investments

    “I was using that money to actually pay for the apartment we were living in,” she told consumer investigator Justin Gray, who has been digging into the overpayments issue for three years.

    As a result of the months-long investigation in partnership in KFF Health News, SSA Acting Commissioner Dr. Kilolo Kijakazi said in Oct. 2023 that she plans on “putting together a team to review overpayment policies and procedures to further improve how we serve our customers.”

    In the meantime, here’s what you can do if you receive a dreaded repayment notice in the post.

    Paying back benefits

    As of December 2023, there were 67 million Americans receiving Social Security benefits. Of that total, over 8.5 million Americans were claiming disability insurance from the SSA, receiving an average monthly benefit of $1,395, according to federal data.

    With numbers like that, it is only natural that mistakes can and do fall through the cracks — but the SSA does have official procedures in place to resolve payment issues.

    “Benefits are overpaid when we can’t accurately calculate your benefit amount because our information is wrong or incomplete,” the SSA explains online. “It can happen if you don’t share updates with us about what’s changed in your life, like your ability to work, living situation, marital status or income.”

    If you receive a letter from the SSA which says you got more money than you should have, you have at least 30 days (plus five mail days from the date of the notice) to pay back the full amount. If you fail to do so within that time frame, the SSA will start collection of the overpayment — potentially by reducing or halting Social Security monthly benefits, or garnishing wages and federal tax refunds — unless you submit a timely request for a waiver or reconsideration.

    How to reduce or appeal your repayment

    A shock Social Security repayment notice doesn’t have to end in your financial ruin. There are ways to request help from the SSA.

    If you receive a valid overpayment notice but are unable to pay the SSA back within 30 days, you can request to repay your debt in smaller and more manageable monthly payments.

    If you don’t agree you’ve been overpaid or the overpayment amount is incorrect, you can submit an appeal online or by mail. Make sure you have all of your medical information and supporting documents (including forms, legal documents, and written statements) ready before requesting a repayment consideration.

    You can also ask the SSA to waive your repayment if you can’t afford it and feel the error wasn’t your fault, or if you think the overpayment is unfair for another reason. Again, the SSA may ask to see evidence of your income and expenses before they agree to waive your debt.

    Receiving any type of payment demand can be scary — especially if you’re not expecting it — but the worst thing you can do is run from it. It is always worth contacting your collector to see if you can come up with a repayment plan that works for you and exploring other ways to improve your situation.

    What to read next

    This article provides information only and should not be construed as advice. It is provided without warranty of any kind.

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  • GoFundMe Is a Health-Care Utility Now

    GoFundMe Is a Health-Care Utility Now


    GoFundMe started as a crowdfunding site for underwriting “ideas and dreams,” and, as GoFundMe’s co-founders, Andrew Ballester and Brad Damphousse, once put it, “for life’s important moments.” In the early years, it funded honeymoon trips, graduation gifts, and church missions to overseas hospitals in need. Now GoFundMe has become a go-to for patients trying to escape medical-billing nightmares.

    One study found that, in 2020, the number of U.S. campaigns related to medical causes—about 200,000—was 25 times higher than the number of such campaigns on the site in 2011. More than 500 campaigns are currently dedicated to asking for financial help for treating people, mostly kids, with spinal muscular atrophy, a neurodegenerative genetic condition. The recently approved gene therapy for young children with the condition, by the drugmaker Novartis, costs about $2.1 million for the single-dose treatment.

    Perhaps the most damning aspect of all this is that paying for expensive care with crowdfunding is no longer seen as unusual; instead, it is being normalized as part of the health system, like getting blood work done or waiting on hold for an appointment. Need a heart transplant? Start a GoFundMe in order to get on the waiting list. Resorting to GoFundMe when faced with bills has become so accepted that in some cases, patient advocates and hospital financial-aid officers recommend crowdfunding as an alternative to being sent to collections. My inbox and the Bill of the Month project (run by KFF Health News, where I am the senior contributing editor, and NPR) have become a kind of complaint desk for people who can’t afford their medical bills, and I’m gobsmacked every time a patient tells me they’ve been advised that GoFundMe is their best option.

    GoFundMe itself acknowledges the reliance of patients on the company’s platform. Ari Romio, a spokesperson for the company, said that “medical expenses” is the most common category of fundraiser it hosts. But she declined to say what proportion of campaigns are medically related, because people starting a campaign self-select the purpose of the fundraiser. They might choose the family or travel category, she said, if a child needs to go to a different state for treatment, for example. So although the company has estimated in the past that a third of the funds raised on the site are medical-related, that could be an undercount.

    Andrea Coy of Fort Collins, Colorado, turned to GoFundMe in 2021 as a last resort after an air-ambulance bill tipped her family’s finances over the edge. Her son Sebastian, then a year old, had been admitted with pneumonia to a local hospital and then transferred urgently by helicopter to Children’s Hospital Colorado in Denver when his oxygen levels dropped. REACH, the air-ambulance transport company that contracted with the hospital, was out-of-network, and billed the family nearly $65,000 for the ride—more than $28,000 of which Coy’s insurer, UnitedHealthcare, paid. Even so, REACH continued sending Coy’s family bills for the remaining balance, and later began regularly calling Coy to try to collect, enough that she felt the company was harassing her, she told me.

    Coy made multiple calls to her company’s human-resources department, REACH, and UnitedHealthcare for help in resolving the case. She applied to various patient groups for financial assistance and was rejected again and again. Eventually, she got the outstanding balance knocked down to $5,000, but even that was more than she could afford on top of the $12,000 the family owed out-of-pocket for Sebastian’s actual treatment.

    That’s when a hospital financial-aid officer suggested she try GoFundMe. But, as Coy said, “I’m not an influencer or anything like that,” so the appeal “offered only a bit of temporary relief—we’ve hit a wall.” They have gone deep into debt and hope to climb out of it.

    In an emailed response, a spokesperson for REACH noted that they could not comment on a specific case because of patient-privacy laws, but that, if the ride occurred before the federal No Surprises Act went into effect, the bill was legal. (That act protects patients from such air-ambulance bills and has been in force since January 1, 2022.) But the spokesperson added, “If a patient is experiencing a financial hardship, we work with them to find equitable solutions.” What is “equitable”—and whether that includes seeking an additional $5,000, beyond a $28,000 insurance payment, for transporting a sick child—is subjective, of course.

    In many respects, research shows, GoFundMe tends to perpetuate socioeconomic disparities that already affect medical bills and debt. If you are famous or part of a circle of friends who have money, your crowdfunding campaign is much more likely to succeed than if you are middle-class or poor. When the family of the former Olympic gymnast Mary Lou Retton started a fundraiser on another platform, *spotfund, for her recent ICU stay at a time when she was uninsured, nearly $460,000 in donations quickly poured in. (Although Retton said she could not get affordable insurance because of her preexisting condition—dozens of orthopedic surgeries—the Affordable Care Act prohibits insurers from refusing to cover people because of their prior medical histories, or charging them abnormally high rates.)

    And given the price of American health care, even the most robust fundraising can feel inadequate. If you’re looking for help to pay for a $2 million drug, even tens of thousands is a drop in the bucket.

    Rob Solomon, the CEO of the platform from 2015 to March 2020, who was named one of Time magazine’s 50 most influential people in health care, has said that he “would love nothing more than for ‘medical’ to not be a category on GoFundMe.” He told KFF Health News that “the system is terrible. It needs to be rethought and retooled. Politicians are failing us. Health-care companies are failing us. Those are realities.”

    But despite the noble ambitions of its original vision, GoFundMe is a privately held for-profit company. In 2015, the founders sold a majority stake to a venture-capital investor group led by Accel Partners and Technology Crossover Ventures. And when I asked about medical bills being the most common reason for GoFundMe campaigns, the company’s current CEO, Tim Cadogan, sounded less critical than his predecessor of the health system, whose high prices and financial cruelty have arguably made his company famous.

    “Our mission is to help people help each other,” he said. “We are not, and cannot, be the solution to complex, systemic problems that are best solved with meaningful public policy.”

    And that’s true. Despite the site’s hopeful vibe, most campaigns generate only a small fraction of the money owed. Almost all of the medical-expense campaigns in the U.S. fell short of their goal, and some raised little or no money, a 2017 study from the University of Washington found. The average campaign made it to just about 40 percent of the target amount, and there is evidence that yields—measured as a percent of their target—have gotten worse over time.

    Carol Justice, a recently retired civil servant and a longtime union member in Portland, Oregon, turned to GoFundMe after she faced a mammoth unexpected bill for bariatric surgery at Oregon Health & Science University.

    She had expected to pay about $1,000, the amount left in her deductible, after her health insurer paid the $15,000 cap on the surgery. She didn’t understand that a cap meant she would have to pay the difference if the hospital, which was in-network, charged more.

    And it did, leaving her with a bill of $18,000, to be paid all at once or in monthly $1,400 increments. “That’s more than my mortgage,” she told me. “I was facing filing for bankruptcy or losing my car and my house.” She made numerous calls to the hospital’s financial-aid office, many unanswered, and received only unfulfilled promises that “we’ll get back to you” about whether she qualified for help.

    So, Justice said, her health coach—provided by the city of Portland—suggested starting a GoFundMe. The campaign yielded about $1,400, just one monthly payment, including $200 from the health coach and $100 from an aunt. She dutifully sent each donation directly to the hospital.

    In an emailed response, the hospital system said that it couldn’t discuss individual cases, but that “financial assistance information is readily available for patients, and can be accessed at any point in a patient’s journey with OHSU. Starting in early 2019, OHSU worked to remove barriers for patients most in need by providing a quick screening for financial assistance that, if a certain threshold is met, awards financial assistance without requiring an application process.”

    This particular tale has a happy-ish ending. In desperation, Justice went to the hospital and planted herself in the financial-aid office, where she had a tearful meeting with a hospital representative who determined that—given her finances—she wouldn’t have to pay the bill.

    “I’d been through the gamut and just cried,” she said. She told me that she would like to repay the people who donated to her GoFundMe. But so far, the hospital won’t give the $1,400 back.



    Elisabeth Rosenthal

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