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Smaller Employers Weigh a Big-Company Fix for Scarce Primary Care: Their Own Clinics

With his company’s health costs soaring and his workers struggling with high blood pressure and other medical conditions, Winston Griffin, CEO of Laurel Grocery Co., knew his company had to do something.

So the London, Kentucky, wholesaler opened a health clinic.

“Our margins are tiny, so every expense is important,” Griffin said. The clinic, he said, has helped lower the company’s health costs and reduce employee sick leave.

Large employers have run clinics for decades. At Laurel Grocery’s in-house clinic, workers can get checkups, blood tests, and other primary care needs fulfilled free, without leaving the workplace. But Griffin’s move is notable because of his company’s size: only about 250 employees.

Nationwide, a modest number of small- and medium-size employers have set up their own health clinics at or near their workplaces, according to surveys and interviews with corporate vendors and consulting firms that help employers open such facilities.

Improving employee health and lowering health costs are among the main advantages employers cite for running clinics. But some companies also say they’re helping to blunt the nation’s shortage of primary care doctors and eliminate the hassle of finding and getting care.

“Why did we do this? So my employees would not drop dead on the floor,” Griffin said. “We had such an unhealthy workforce, and drastic times called for drastic measures.”

KFF’s annual survey of workplace benefits this year found that about 20% of employers who offer health insurance and have 200 to 999 workers provide on-site or near-site clinics. That compares with 30% or better for employers with 1,000 or more workers.

Those figures have been relatively steady in recent years, surveys show.

And U.S. employers reported the biggest increase this year in annual family premiums for their sponsored health plans in a decade — an average jump of 7% to nearly $24,000, according to the KFF survey, released Oct. 18. That spike may intensify interest among business leaders in curbing underlying health costs, including by exploring delivering care at workplaces.

Employers don’t require their workers to use their clinics but typically provide incentives such as free or reduced copayments. Griffin offered employees $150 to get a physical at the clinic; 90% took advantage of the deal, he said.

Employer clinics could alleviate the rising demand for primary care. A far lower proportion of U.S. doctors are generalists than in other advanced economies, according to data compiled by the Peterson Center on Healthcare and KFF.

For patients, frustrating wait times are one result. A recent survey by a physician staffing firm found it now takes an average of three weeks to get in to see a family doctor.

In 2022, Franklin International, a manufacturer of adhesives in Columbus, Ohio, began offering its 450 workers the option to use local primary care clinics managed by Marathon Health, one of about a dozen companies that set up on-site or near-site health centers for employers.

Franklin employees pay nothing at the clinics compared with a $50 copayment to see an outside doctor in their insurance network. So far about 30% of its workers use the Marathon clinics, said Doug Reys, Franklin’s manager of compensation benefits.

“We heard about the difficulty employees had to get in to a doctor,” he said. They would call providers who said they were accepting new patients but would still wait months for an appointment, he added.

At the Marathon clinics — which are shared by other employers — workers now can see a provider within a day, he said.

That’s good for employees — and for the company’s recruiting efforts. “It is a good benefit to say you can get free primary care,” Reys said.

Not all employers that have explored opening their own clinics have seen the value. In 2020, the agency that oversees health benefits for Wisconsin state employees opted against the on-site model after a review of experiences by similar agencies in Indiana and Kentucky found it didn’t save money or constrain health insurance premiums.

Kara Speer, national practice leader for consulting firm WTW, said potential cost savings from employer-run clinics can take years to accrue as employees shift from pricier hospital emergency rooms and urgent care clinics. And it can be difficult to measure whether clinics control costs by improving workers’ health through preventive screenings and checkups, she said.

Kathy Vicars, a senior vice president at Marathon Health, said about 25% of its 250 clients are firms with fewer than 500 people. She said Marathon’s clinics help drive down costs and help employees get easier access to doctors who spend more time with them during appointments. Her company helps employers manage workers with chronic diseases better and redirects care from urgent care centers and ERs, she said.

Hospitals have also sought to get into the business of running on-site clinics for employers, but some potential clients question whether those health systems have incentives to funnel workers to their own hospitals and specialists.

At Laurel Grocery, Griffin said he knows many of his employees don’t regularly exercise and have poor diets — a reflection of the overall population in the region. Health screenings performed by a local hospital over the years found many residents with high cholesterol and high blood pressure. “Nothing tended to change,” he said.

Laurel Grocery contracts with a local hospital for about $100,000 a year to manage its clinic, including having a physician assistant on-site three days a week. Laurel Grocery does not have access to any employee health records.

He said the clinic has saved money by reducing unnecessary ER use and reducing hospitalizations. “It’s been way more successful than I thought it would” be, he said.

The clinic is about a three-minute walk from Kip Faulhaber’s office. Faulhaber, a senior vice president at Laurel Grocer who is 73, said he goes in every week for a vitamin B12 shot to treat a deficiency. He also turns to the clinic for an annual physical, vaccinations, and when he has a sinus infection but doesn’t want to wait several days to see his regular physician.

“This is more than convenient,” he said.

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

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KFF Health News' 'What the Health?': The New Speaker’s (Limited) Record on Health

The Host

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

After nearly a month of bickering, House Republicans finally elected a new speaker: Louisiana Republican Rep. Mike Johnson, a relative unknown to many. And while Johnson has a long history of opposition to abortion and LGBTQ+ rights, his positions on other health issues are still a bit of a question mark.

Meanwhile, a new study found that in the year following the overturn of Roe v. Wade, the number of abortions actually rose, particularly in states adjacent to those that now have bans or severe restrictions.

This week’s panelists are Julie Rovner of KFF Health News, Rachel Cohrs of Stat, and Alice Miranda Ollstein of Politico.

Panelists

Rachel Cohrs Stat News @rachelcohrs Read Rachel's stories Alice Miranda Ollstein Politico @AliceOllstein Read Alice's stories

Among the takeaways from this week’s episode:

New House Speaker Mike Johnson (R-La.) doesn’t have much of a legislative record, but in a previous life he worked for the Christian conservative law firm Alliance Defending Freedom. ADF has been on the winning side of several major Supreme Court cases on social issues in the past decade, including the case that overturned Roe v. Wade.
In Colorado this week, a federal judge ruled that the state cannot enforce a new law banning medication abortion “reversals,” an unproven treatment that most medical associations don’t recognize, because it could violate the religious rights of those who do advocate it.
A new demonstration Medicaid program in Georgia to require low-income adults who want Medicaid coverage to prove they work a certain number of hours per week is off to a slow start, enrolling in its first three months only about 1,300 of the estimated 100,000 people who could be eligible.
The National Institutes of Health may soon get a Senate-confirmed director for the first time in more than a year and a half. The Senate Health, Education, Labor and Pensions Committee, after a several-months delay, voted on a bipartisan basis to elevate National Cancer Institute chief Monica Bertagnolli to the top post at NIH. Notably, among the votes against her on the panel came from the committee chair, Sen. Bernie Sanders (I-Vt.), who has been trying to leverage the nomination to win more drug pricing concessions from the Biden administration. Bertagnolli is still expected to win full Senate approval.
Finally, in the first installment of a new podcast feature, “This Week in Medical Misinformation,” KFF Health News’ Liz Szabo writes about how Suzanne Somers, a popular TV actress from the late 1970s through the 1990s, used her fame to push questionable medical treatments, becoming an “influencer” long before there was such a thing.

Also this week, Rovner interviews Michael Cannon, director of health policy studies for the Cato Institute, a libertarian think tank, about his new book, “Recovery: A Guide to Reforming the U.S. Health Sector.”

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

Julie Rovner: The Washington Post’s “The Pandemic Has Faded in This Michigan County. The Mistrust Never Ended,” by Greg Jaffe and Patrick Marley.

Alice Miranda Ollstein: Politico’s “Dozens of States Sue Meta Over Addictive Features Harming Kids,” by Rebecca Kern, Josh Sisco, and Alfred Ng.

Rachel Cohrs: The New York Times’ “Ozempic and Wegovy Don’t Cost What You Think They Do,” by Gina Kolata.

Also mentioned in this week’s episode:

KFF Health News’ “Suzanne Somers’ Legacy Tainted by Celebrity Medical Misinformation,” by Liz Szabo.

Credits

Francis Ying Audio producer Stephanie Stapleton Editor

To hear all our podcasts, click here.

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

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Doubts Abound About a New Alzheimer’s Blood Test

For the first time, people worried about their risk of Alzheimer’s disease can go online, order a blood test, and receive results in the privacy of their homes.

This might seem appealing on the surface, but the development has Alzheimer’s researchers and clinicians up in arms.

The Quest Diagnostics blood test, AD-Detect, measures elevated levels of amyloid-beta proteins, a signature characteristic of Alzheimer’s. Introduced in late July, the test is targeted primarily at people 50 and older who suspect their memory and thinking might be impaired and people with a family history of Alzheimer’s or genetic risks for the condition.

Given Alzheimer’s is among the most feared of all medical conditions, along with cancer, this could be a sizable market, indeed. Nearly 7 million older adults in the U.S. have Alzheimer’s, and that number is expected to double by 2060 if medical breakthroughs don’t occur.

But Alzheimer’s researchers and clinicians aren’t convinced the Quest test is backed by sound scientific research. The possibility of false-positive results is high, as is the likelihood that older adults won’t understand the significance of their results, they say. The test should be taken only under a physician’s supervision, if at all, they advise. And, priced originally at $399 (recently discounted to $299) and not covered by insurance, it isn’t cheap.

Though blood tests for Alzheimer’s are likely to become common in the years ahead, the Alzheimer’s Association said it’s premature to offer a test of this kind directly to consumers.

For its part, Quest, which also sells direct-to-consumer tests for sexually transmitted diseases and various other conditions, suggests older adults can be trusted to respond responsibly to AD-Detect results. The test is not meant to diagnose Alzheimer’s, the company stressed; instead, it’s meant to help assess an individual’s risk of developing the condition. But under a new, proposed biological definition of Alzheimer’s, excess amyloid could automatically trigger a diagnosis of “preclinical” Alzheimer’s.

Michael Racke, Quest’s medical director of neurology, said individuals who test positive might be inspired to talk to their physicians about cognitive symptoms and seek comprehensive evaluations from dementia specialists. Others may just want to adopt behaviors associated with brain health, such as exercising more and maintaining healthy blood pressure, blood sugar, and cholesterol levels.

“People who do consumer-initiated testing are often very motivated to figure out what they can do to help reduce the risk of disease,” he said.

To get the test, a person first needs to go to the AD-Detect test’s website and report that they’re experiencing mild cognitive decline and have at least one other risk factor. (Self-reported complaints of this kind are often unreliable, experts note.) The order then goes automatically to a doctor paid by Quest, who will order a blood test to be drawn at a Quest laboratory.

Results classifying a person as low, medium, or high risk will be provided on a secure patient portal. Post-test counseling isn’t mandatory, but individuals can speak to a physician paid by Quest, if they like. (There is a separate $13 “physician service fee.”)

A new poll from the University of Michigan confirms that older adults will take results seriously: Ninety-seven percent of seniors said they would take steps to improve brain health upon receiving a positive result from a blood test, while 77% said they would consider changes to financial or end-of-life plans.

But research scientists and clinicians worry that Quest hasn’t published any peer-reviewed studies documenting the test’s validity. The company’s preliminary data released at the 2022 Alzheimer’s Association International Conference in San Diego suggests there’s a relatively high chance of false-positive results, said Suzanne Schindler, an associate professor of neurology at Washington University School of Medicine in St. Louis.

That’s a significant problem because telling someone they have biological changes associated with Alzheimer’s disease is a “big deal and you want to be as accurate as possible,” Schindler noted.

Racke said at least three scientific studies giving more details about the AD-Detect test have been submitted to medical journals and might be published by the end of this year.

Experts also question the usefulness of the test since a positive result (indicating abnormal levels of amyloid in the blood) doesn’t mean an individual will definitely develop Alzheimer’s disease. Amyloid in the brain accumulates slowly over the course of decades, typically beginning in middle age, and becomes more common as people age.

“This test gives you a fuzzy answer. We don’t know whether you’re going to get dementia, or when symptoms might begin, or, really, how high the risk is for any individual,” said Meera Sheffrin, medical director of the Senior Care clinic at Stanford Healthcare.

Also, cognitive symptoms that prompt someone to take the test might be due to a wide variety of other causes, including mini-strokes, sleep apnea, thyroid problems, vitamin B12 deficiency, or medication interactions. If an older adult becomes anxious, depressed, or hopeless upon learning they’re at risk for Alzheimer’s — another source of concern — “they may not go for further evaluation and seek appropriate care,” said Rebecca Edelmayer, senior director of scientific engagement at the Alzheimer’s Association.

The University of Michigan poll confirms the potential for misunderstanding. Upon receiving a positive result from a blood test, 74% of seniors said they would believe they were likely to develop Alzheimer’s and 64% said they would be likely to experience significant distress.

Because the science behind blood tests for Alzheimer’s is still developing and because “patients may not really understand the uncertainty of test results,” Edelmayer said, the Alzheimer’s Association “does not endorse the use of the AD-Detect test by consumers.”

Quest’s blood test is one of several developments altering the landscape of Alzheimer’s care in the United States. In early July, the FDA granted full approval to Leqembi, an anti-amyloid therapy that slightly slows cognitive decline in people with mild cognitive impairment and early-stage Alzheimer’s. Early detection of cognitive symptoms and diagnosis of cognitive dysfunction have assumed greater importance now that this disease-modifying drug is available.

Also in July, a work group convened by the National Institute on Aging and the Alzheimer’s Association proposed a new definition of Alzheimer’s disease to be used in clinical practice.

Previously, Alzheimer’s could be diagnosed only when there was evidence of underlying brain pathology (amyloid plaques and tau tangles) as well as cognitive symptoms (memory loss, poor judgment, disorientation, among others) and accompanying impairments (difficulty with managing finances, wandering, problems with self-care, and more). Under the new definition, Alzheimer’s would be defined purely on a biological basis, as a “continuum that is first evident with the appearance of brain pathologic changes” including amyloid accumulation, according to a draft of the work group’s report.

That would mean “you can get a positive result from the Quest test and be diagnosed with Alzheimer’s disease if these guidelines are adopted, even if you’re cognitively normal,” cautioned Eric Widera, a professor of medicine at the University of California-San Francisco.

Demand for follow-up evaluations by dementia specialists is likely to be high and contribute to already-long waits for care, he suggested.

Additional concerns about the test relate to safeguarding privacy and the potential for discrimination. No federal laws protect people who receive Alzheimer’s biomarker results from discriminatory practices, such as employment discrimination or the denial of life, disability, or long-term care insurance. (The Genetic Information Nondiscrimination Act applies only to genetic tests.) And “laws that normally protect the privacy of health information do not apply in this space,” said Emily Largent, an assistant professor of medical ethics and health policy at the University of Pennsylvania’s Perelman School of Medicine.

Notably, HIPAA, the Health Insurance Portability and Accountability Act, doesn’t extend to laboratory tests marketed directly to consumers.

The bottom line: Before taking a test, “older adults need to ask themselves, ‘Why do I want to know this? What will I do with the information? How will I react? What would I change in the future?’” said C. Munro Cullum, a neuropsychologist and distinguished professor of clinical psychology at the University of Texas Southwestern Medical Center. “This test needs to be used very cautiously and with great forethought.”

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. Visit kffhealthnews.org/columnists to submit your requests or tips.

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Pruebas genéticas rápidas a bebés pueden salvar vidas, pero muchas aseguradoras no las cubren

A 48 horas de su nacimiento en un hospital del área de Seattle en 2021, Layla Babayev fue sometida a una cirugía por una obstrucción intestinal. Dos semanas después, tuvo otra cirugía de emergencia. Luego desarrolló meningitis.

Layla pasó más de un mes en terapia intensiva neonatal en tres hospitales mientras los médicos buscaban la causa de su enfermedad.

Sus padres la inscribieron en un ensayo clínico para buscar una condición genética. A diferencia de las pruebas genéticas centradas en algunas variantes causantes de enfermedades, que pueden tardar meses en producir resultados, el estudio en el Hospital de Niños de Seattle secuenciaría todo el genoma de Layla, buscando una amplia gama de anomalías, con la posibilidad de ofrecer respuestas en menos de una semana.

La prueba reveló que Layla tenía un trastorno genético raro que causaba defectos gastrointestinales y comprometía su sistema inmunológico. Su padre, Dmitry Babayev contó que, por este hallazgo, sus médicos la aislaron, comenzaron administrarle infusiones semanales de antibióticos, y se pusieron en contacto con otros hospitales que habían tratado la misma condición.

Hoy en día, Babayev atribuye a la prueba, conocida como secuenciación rápida de todo el genoma, la vida de su hija. “Es por eso que creemos que Layla todavía está con nosotros hoy”, dijo.

Sin embargo, la experiencia de Layla con su trastorno es rara. Pocos bebés hospitalizados con una enfermedad sin diagnosticar se someten a la secuenciación rápida de todo el genoma, una herramienta de diagnóstico que permite a los científicos identificar rápidamente trastornos genéticos y guiar las decisiones de tratamiento de los médicos al analizar todo el ADN del paciente.

Esto se debe en gran parte a que muchos seguros de salud, públicos y privados, no cubren el costo que oscila entre $4,000 y $8,000.

Pero una alianza de empresas de pruebas genéticas, farmacéuticas, hospitales infantiles y médicos ha presionado a los estados para aumentar la cobertura bajo Medicaid, y estos esfuerzos han comenzado a dar resultados.

Desde 2021, programas de Medicaid en ocho estados han agregado la secuenciación rápida de todo el genoma a su cobertura o la cubrirán pronto, según GeneDX, un proveedor de la prueba. Esto incluye a Florida, donde la legislatura controlada por los republicanos ha resistido la expansión de Medicaid bajo la Ley de Cuidado de Salud a Bajo Precio (ACA).

Georgia, Massachusetts, Nueva York y Carolina del Norte también están considerando cubrirla, según el Rady Children’s Institute for Genomic Medicine, otro importante proveedor de la prueba.

Que Medicaid cubra la prueba puede expandir significativamente el acceso para los bebés; el programa de salud federal gerenciado por los estados que asegura a las familias de bajos ingresos y que cubre a más del 40% de los niños en su primer año de vida.

“Esta es una prueba extraordinaria y poderosa que puede cambiar el curso de las enfermedades de estos niños y nuestra propia comprensión”, dijo Jill Maron, jefa de pediatría en el Women & Infants Hospital en Providence, Rhode Island, quien ha investigado sobre este test.

“Lo único que está interfiriendo con un uso más generalizado es el pago del seguro”, agregó.

Los defensores de la secuenciación de todo el genoma, que ha estado comercialmente disponible por alrededor de seis años, dicen que puede ayudar a los bebés enfermos con enfermedades potencialmente raras a evitar una odisea de pruebas y hospitalizaciones de meses o años sin un diagnóstico claro, y aumentar la supervivencia.

También señalan estudios que muestran que las pruebas rápidas de todo el genoma pueden reducir los costos generales de salud al disminuir las hospitalizaciones, pruebas y atención innecesarias.

Pero la prueba puede tener sus limitaciones. Aunque es mejor para identificar trastornos raros que las pruebas genéticas antiguas, la secuenciación de todo el genoma detecta una mutación solo alrededor de la mitad de las veces, ya sea porque la prueba no detecta algo o porque el paciente no tiene un trastorno genético en absoluto.

Además, plantea preguntas éticas porque también puede revelar que los bebés, y sus padres, tienen genes que los colocan en mayor riesgo de condiciones que se desarrollan en la adultez, como el cáncer de mama y ovario.

Aun así, algunos médicos dicen que la secuenciación ofrece la mejor oportunidad para hacer un diagnóstico cuando las pruebas de rutina no ofrecen respuestas. Pankaj Agrawal, jefe de neonatología en la Escuela de Medicina Miller de la Universidad de Miami, dijo que solo alrededor del 10% de los bebés que podrían beneficiarse de la secuenciación de todo el genoma la están recibiendo.

“Es súper frustrante tener bebés enfermos y no tener una explicación de qué está causando sus síntomas”, dijo.

Ahora, algunos seguros privados cubren la prueba con ciertas limitaciones, incluidos UnitedHealthcare y Cigna, pero otros no. Incluso en los estados que han adoptado la prueba, la cobertura varía. Florida agregará el beneficio a Medicaid más adelante este año para pacientes de hasta 20 años que estén en terapias intensivas.

Adam Anderson, representante estatal de Florida, un republicano cuyo hijo de 4 años murió en 2019 después de ser diagnosticado con la enfermedad de Tay-Sachs, un trastorno genético raro, lideró la campaña para que Medicaid cubriera la secuenciación. El nuevo beneficio de Medicaid estatal lleva el nombre de su hijo, Andrew.

Anderson dijo que persuadir a sus colegas republicanos fue un desafío, dado que generalmente se oponen a cualquier aumento en el gasto de Medicaid.

“Tan pronto como escucharon el término ‘mandato de Medicaid’, se cerraron”, dijo. “Como estado, somos fiscalmente conservadores, y nuestro programa de Medicaid ya es enorme, y queremos ver Medicaid más pequeño”.

Anderson dijo que a los médicos les llevó más de un año diagnosticar a su hijo, un momento emocionalmente difícil para la familia mientras Andrew soportaba numerosas pruebas y viajes para ver a distintos especialistas en varios estados.

“Sé lo que es no obtener esas respuestas mientras los médicos intentan descubrir qué está mal, y sin pruebas genéticas, es casi imposible”, dijo.

Un análisis de la Cámara de Representantes de Florida estimó que si el 5% de los bebés en las terapias intensivas neonatales del estado se sometieran a la prueba cada año, costaría al programa de Medicaid alrededor de $3.3 millones anuales.

Los líderes legislativos de Florida se persuadieron en parte por un estudio de 2020 llamado Proyecto Baby Manatee, en el cual el Hospital de Niños Nicklaus en Miami secuenció los genomas de 50 pacientes. Como resultado, 20 pacientes, aproximadamente el 40%, recibieron un diagnóstico, lo que llevó a cambios en el cuidado de 19 de ellos.

El ahorro estimado superó los $3.7 millones, con un retorno de inversión de casi $2.9 millones, después del costo de las pruebas, según el informe final.

“Hemos demostrado que podemos justificar esto como una buena inversión”, dijo Parul Jayakar, directora de la División de Genética Clínica y Metabolismo del hospital, quien trabajó en el estudio.

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California Expands Paid Sick Days and Boosts Health Worker Wages

SACRAMENTO, Calif. — California continues to burnish its reputation as a progressive state for health policy as Gov. Gavin Newsom signed bills expanding paid sick leave, adding bereavement leave for miscarriages, and boosting wages for health workers.

Newsom blessed a rare agreement between labor and the health industry to gradually phase in a nation-leading $25-an-hour statewide minimum wage for health workers. Estimates based on earlier versions of the bill found it would increase health care costs by billions of dollars each year and put pressure on the state’s Medicaid program to raise reimbursement rates for long-term care to maintain patients’ access to services. Other new laws aim to strengthen reproductive rights, as well as patient protections against errant doctors and pharmacists and surprise ambulance bills.

Still, in a possible sign of his national ambitions and experience as a businessperson and father, the Democrat tempered the bill-signing season by vetoing free condoms in schools and possession of psychedelic mushrooms.

He rejected decriminalizing such hallucinogens even as he supported their therapeutic potential as “an exciting frontier.” He urged lawmakers to try again next year, this time adding specific treatment guidelines including recommended doses and protections for people with underlying psychoses. The bill’s lead author, state Sen. Scott Wiener of San Francisco, had introduced the proposal amid successful decriminalization efforts in Colorado, Oregon, and some cities, saying veterans and others suffering from post-traumatic stress disorder and depression should not be penalized for seeking relief.

Newsom also shot down a $35 price cap for a 30-day supply of insulin in favor of his own price-cutting efforts, touting his administration’s $50 million contract to begin sourcing its own insulin as early as next year. He argued this approach would avoid indirect price hikes for consumers that could come in the form of higher premiums to cover cheaper insulin.

The governor similarly showed caution in vetoing health and safety protections for domestic workers, arguing that “private households and families cannot be regulated in the exact same manner as traditional businesses.”

The new laws will take effect in 2024 unless otherwise noted:

Sick Days

California workers will be entitled to five paid sick days a year under SB 616, by state Sen. Lena Gonzalez, a Democrat from Long Beach. That’s up from the three days required in California since 2014, but short of the seven days Gonzalez originally sought. Advocates say workers shouldn’t have to show up sick, potentially spreading illness, because they can’t afford to stay home. But the California Chamber of Commerce included the bill on its annual job killer list and said it would harm struggling small businesses.

Miscarriage and Failed Adoption Leave

Parents who experience miscarriages, stillbirths, failed adoptions, or a breakdown in a surrogate pregnancy agreement will all be entitled to bereavement leave under SB 848. The bill, by state Sen. Susan Rubio, a Democrat from the San Gabriel Valley, will include unpaid reproductive loss leave under the state’s existing law allowing up to five days of bereavement leave upon the death of a family member. She called reproductive losses “one of the most traumatizing events a person can experience,” noting that Illinois and Utah enacted similar laws in 2022. The bill applies to companies with five or more employees.

Abortion Protections

A year after the U.S. Supreme Court overturned Roe v. Wade, Newsom signed nine abortion-related laws, adding to the strong protections for the procedure that California lawmakers adopted a year ago. Among them is SB 345, which increases protections for medical providers who live in California but mail abortion pills or gender-related medications to states where they are illegal. The bill’s lead author, state Sen. Nancy Skinner, a Democrat from Berkeley, said in a statement that the laws strengthen California’s position “as the national leader for reproductive freedom.” Another bill, AB 1646, by Assembly member Stephanie Nguyen, a Democrat from Elk Grove, allows doctors from other states to receive abortion training in California without having to obtain a California medical license.

Behavioral Health Funding

Voters will get a direct say in March on Proposition 1, Newsom’s key behavioral health initiative. Having signed a bipartisan package of bills, Newsom will ask voters to approve billions of dollars aimed at alleviating California’s seemingly incorrigible homelessness crisis. He says that represents a paradigm shift in how California addresses the dilemma, but the proposition is opposed by those worried about expanding involuntary treatment and diverting funding from existing community-based programs. He also signed SB 43, expanding the state’s conservatorship law to make it easier to force people into treatment for mental illness or addiction.

Medical Licensing Fees

The Medical Board of California will be required to follow new procedures while investigating complaints, while doctors will pay higher licensing fees to help fund those investigations. SB 815, by Sen. Richard Roth, a Riverside Democrat, mandates the new complaint procedures amid criticism of the board by patient advocates, who say bad doctors often escape sanction. It will gradually boost the license renewal fee to $1,255 every two years, up from $863 currently. It also repeals AB 2098, passed last year, that said it is unprofessional conduct for doctors to spread misinformation or disinformation related to covid-19. The law was entangled in multiple lawsuits with conflicting rulings, including one by a federal judge who called it “unconstitutionally vague.”

Pharmacy Errors

Medication errors harm at least 1.5 million Americans annually and are among the most common medical errors, according to the National Academy of Medicine. In California, they are the top violation resulting in a citation. AB 1286, by Assembly member Matt Haney, a Democrat from San Francisco, imposes what he said is a first-in-the-nation requirement that retail pharmacies report every error. It also gives the pharmacist in charge at each store the authority to increase staffing and the duty to inform the store’s management of dangerous conditions. The California State Board of Pharmacy can close a pharmacy if the conditions aren’t improved.

Surprise Ambulance Bills

Patients who call for an ambulance can sometimes receive “surprise bills” topping $1,000, according to Health Access California. AB 716, by Assembly member Tasha Boerner, a Democrat from Encinitas, protects consumers from being charged out-of-network costs for ambulance services and uninsured Californians from being charged what she calls inflated ambulance rates. An analysis by the California Health Benefits Review Program said that would require health plans and insurers to pay more for out-of-network services.

Lifesaving Medications

AB 1651, by Assembly member Kate Sanchez, a Republican from Rancho Santa Margarita, will require schools to have emergency epinephrine auto-injectors for use by school nurses or trained volunteers to treat life-threatening anaphylactic reactions. More than 15% of children with food allergies have had a reaction at school, according to the Latino Food Allergy Network, which sought the bill.

Food Safety

By 2027, California will become the first U.S. state to ban four chemicals widely used in processed food and drinks, following the lead of the European Union and other nations. AB 418, by Democratic Assembly members Jesse Gabriel and Buffy Wicks, initially drew headlines because it would have banned titanium dioxide, which is used in Skittles, but that chemical was dropped from the bill. Opponents said the U.S. and California already have sufficient food safety and food labeling requirements. Newsom and the bill’s supporters chided the Food and Drug Administration for failing to take action.

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

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Tiny, Rural Hospitals Feel the Pinch as Medicare Advantage Plans Grow

Jason Bleak runs Battle Mountain General Hospital, a small facility in a remote Nevada gold mining town that he described as “out here in the middle of nowhere.”

When several representatives from private health insurance companies called on him a few years ago to offer Medicare Advantage plan contracts so their enrollees could use his hospital, Bleak sent them away.

“Come back to the table with a better offer,” the chief executive recalled telling them. The representatives haven’t returned.

Battle Mountain is in north-central Nevada about a three-hour drive from Reno, and four hours from Salt Lake City. Bleak suspects insurance companies simply haven’t enrolled enough of the area’s seniors to need his hospital in their network.

Medicare Advantage insurers are private companies that contract with the federal government to provide Medicare benefits to seniors in place of traditional Medicare. The plans have become dubious payers for many large and small hospitals, which report the insurers are often slow to pay or don’t pay.

Private plans now cover more than half of all those eligible for Medicare. And while enrollment is highest in metropolitan areas, it has increased fourfold in rural areas since 2010. Meanwhile, more than 150 rural hospitals have closed since 2010, according to the Cecil G. Sheps Center for Health Services Research at the University of North Carolina. Largely rural states such as Texas, Tennessee, and Georgia have had the most closures.

Medicare Advantage growth has had an outsize impact on the finances of small, rural hospitals that Medicare has designated as “critical access.” Under the designation, government-administered Medicare pays extra to those hospitals to compensate for low patient volumes. Medicare Advantage plans, on the other hand, offer negotiated rates that hospital operators say often don’t match those of traditional Medicare.

“It’s happening across the country,” said Carrie Cochran-McClain, chief policy officer of the National Rural Health Association, whose members include small-town hospitals.

“Depending on the level of Medicare Advantage penetration in individual communities, some facilities are seeing a significant portion of their traditional Medicare patient or beneficiary move into Medicare Advantage,” Cochran-McClain said.

Kelly Adams is the CEO of Mesa View Regional Hospital, another rural hospital in Nevada. He said he applauds Battle Mountain’s Bleak for keeping Medicare Advantage plans out of his hospital “as long as he has.”

Mesa View, which is a little more than an hour’s drive east of Las Vegas, has a high percentage of patients enrolled in Medicare Advantage plans.

“Am I going to say I’m not going to take care of 40% of our patients at the hospital or the clinic?” Adams said, adding that it would be a “tough deal” to be forced to reject patients because they didn’t have traditional Medicare.

Mesa View has 21 Medicare Advantage contracts with multiple insurance companies. Adams said he has trouble getting the plans to pay for care the hospital has provided. They are either “slow pay or no pay,” he said.

In all, the plans owe Mesa View more than $800,000 for care already provided. Mesa View lost about $1.3 million taking care of patients, according to its most recent annual cost report.

NRHA’s Cochran-McClain said the growth in the plans also narrows options for patients because “the contracting that is happening under Medicare Advantage frequently has an influence on steering patients to specific types of providers.” If a hospital or provider does not contract with a Medicare Advantage plan, then a patient may have to pay for out-of-network care. That generally wouldn’t happen with traditional Medicare, which is widely accepted.

At Mesa View, patients must drive to Utah to find nursing homes and rehabilitation facilities covered by their Medicare Advantage plans.

“Our local nursing homes are not taking Medicare Advantage patients because they don’t get paid. But if you’re straight Medicare, they’d be happy to take that patient,” Adams said.

David Allen, a spokesperson for AHIP, an industry trade group formerly known as America’s Health Insurance Plans, declined to respond to Bleak’s and Adams’ specific concerns. Instead, he said enrollees are signing on because the plans “are more efficient, more cost-effective, and deliver better value than original Medicare.”

Centers for Medicare & Medicaid Services press secretary Sara Lonardo said CMS has acted to ensure “that private insurance companies are held accountable for providing quality coverage and care.”

The reach of private Medicare Advantage plans varies widely in rural areas, said Keith Mueller, director of the Rural Policy Research Institute at the University of Iowa College of Public Health. If recent trends continue, enrollment could tip to 50% of all rural Medicare beneficiaries in about three years — with some regions like the Upper Midwest already higher than 50% and others lower, such as Nevada and the Mountain States, but trending upward.

In June, a bipartisan group of Congress members, led by Sen. Sherrod Brown (D-Ohio), sent a letter urging federal agencies to do more to force Medicare Advantage insurers to pay health systems what they owe for patient care.

In an August response, CMS Administrator Chiquita Brooks-LaSure wrote that a final rule issued in April made “impactful changes” to speed up care and address concerns about prior authorization — when a hospital and patient must get advance permission for care to ensure it will be covered by an insurer. Brooks-LaSure noted another proposed rule that, once finalized, could mandate that insurers provide specific reasons for denying care within seven days.

Hospital operators Adams and Bleak also want more federal action, and fast.

Bleak at Battle Mountain said he knows Medicare Advantage plans will eventually move into his area and he will have to contract with them.

“The question is,” Bleak said, “how can we match the reimbursement so that we can sustain and keep our hospitals in these rural areas viable and strong?”

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Quick Genetic Test Offers Hope for Sick, Undiagnosed Kids. But Few Insurers Offer to Pay.

Just 48 hours after her birth in a Seattle-area hospital in 2021, Layla Babayev was undergoing surgery for a bowel obstruction.

Two weeks later, she had another emergency surgery, and then developed meningitis. Layla spent more than a month in neonatal intensive care in three hospitals as doctors searched for the cause of her illness.

Her parents enrolled her in a clinical trial to check for a genetic condition. Unlike genetic tests focused on a few disease-causing variants that can take months to produce results, the study at Seattle Children’s Hospital would sequence Layla’s entire genome, looking for a broad range of abnormalities — and potentially offer answers in under a week.

The test found Layla had a rare genetic disorder that caused gastrointestinal defects and compromised her immune system. The findings led doctors to isolate her, give her weekly infusions of antibiotics, and contact other hospitals that had treated the same condition, said her father, Dmitry Babayev.

Today, Babayev credits the test, known as rapid whole-genome sequencing, for saving his daughter’s life. “It is why we believe Layla is still with us today,” he said.

Like her disorder, Layla’s experience is rare.

Few hospitalized babies with an undiagnosed illness undergo whole-genome sequencing — a diagnostic tool that allows scientists to quickly identify genetic disorders and guide clinicians’ treatment decisions by analyzing a patient’s complete DNA makeup. That’s largely because many private and public health insurers won’t cover the $4,000-to-$8,000 expense.

But an alliance of genetic testing companies, drugmakers, children’s hospitals, and doctors have lobbied statesto increase coverage under Medicaid — and their efforts have begun to pay off.

Since 2021, eight state Medicaid programs have added rapid whole-genome sequencing to their coverage or will soon cover it, according to GeneDX, a provider of the test. That includes Florida, where the Republican-controlled legislature has resisted expanding Medicaid under the Affordable Care Act.

The test is also under consideration for coverage in Georgia, Massachusetts, New York, and North Carolina, according to the nonprofit Rady Children’s Institute for Genomic Medicine, another major provider of the test.

Medicaid coverage of the test can significantly expand access for infants; the state-federal program that insures low-income families covers more than 40% of children in their first year of life.

“This is an extraordinary, powerful test that can change the trajectory of these children’s diseases and our own understanding,” said Jill Maron, chief of pediatrics at Women & Infants Hospital in Providence, Rhode Island, who has conducted research on the test.

“The only thing interfering with more widespread use is insurance payment,” she said.

Proponents of whole-genome sequencing, which has been commercially available for about six years, say it can help sick infants with potentially rare diseases avoid a months- or years-long odyssey of tests and hospitalizations without a clear diagnosis — and increase survival.

They also point to studies showing rapid whole-genome testing may lower overall health costs by reducing unnecessary hospitalizations, testing, and care.

But the test may have its limits. While it is better at identifying rare disorders than older genetic tests, whole-genome sequencing detects a mutation only about half of the time — whether because the test misses something or the patient does not have a genetic disorder at all.

And the test raises ethical questions because it can also reveal that babies — and their parents — have genes that put them at increased risk for adult-onset conditions such as breast and ovarian cancer.

Even so, some doctors say sequencing offers the best chance to make a diagnosis when more routine testing doesn’t provide an answer. Pankaj Agrawal, chief of neonatology at the University of Miami Miller School of Medicine, said only about 10% of babies who could benefit from whole-genome sequencing are getting it.

“It is super frustrating to have sick babies and with no explanation what is causing their symptoms,” he said.

Some private insurers now cover the test with certain limitations, including UnitedHealthcare and Cigna, but others do not.

Even in states that have adopted the test, coverage varies. Florida will add the benefit to Medicaid later this year for patients up to age 20 who are in hospital intensive care units.

Florida state Rep. Adam Anderson, a Republican whose 4-year-old son died in 2019 after being diagnosed with Tay-Sachs disease, a rare genetic disorder, led the push for Medicaid to cover sequencing. The new state Medicaid benefit is named for his son, Andrew.

Anderson said persuading his GOP colleagues was challenging, given they typically oppose any increase in Medicaid spending.

“As soon as they heard the term ‘Medicaid mandate,’ they shut down,” he said. “As a state, we are fiscally conservative, and our Medicaid program is already a huge program as it is, and we want to see Medicaid smaller.”

Anderson said it took doctors more than a year to diagnose his son — an emotionally difficult time for the family as Andrew endured numerous tests and trips to specialists in several states.

“I know what it’s like to not get those answers as doctors try to figure out what is wrong, and without genetic testing it’s almost impossible,” he said.

A Florida House analysis estimated that if 5% of babies in the state’s neonatal intensive care units got the test each year, it would cost the Medicaid program about $3.3 million annually.

Florida’s legislative leaders were persuaded in part by a 2020 study called Project Baby Manatee, in which Nicklaus Children’s Hospital in Miami sequenced the genomes of 50 patients. As a result, 20 patients — about 40% — received a diagnosis, leading to changes in care for 19 of them.

The estimated savings exceeded $3.7 million — a nearly $2.9 million return on investment, after the cost of the tests, according to the final report.

“We have shown that we can justify this as a good investment,” said Parul Jayakar, director of the hospital’s Division of Clinical Genetics and Metabolism, who worked on the study.

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Biden Pick to Lead NIH Finally Has Her Day, but Still Gets Caught Up in Drug Price Debate

A Senate committee finally held a hearing Wednesday on President Joe Biden’s pick to lead the National Institutes of Health. But the panel’s chair, Sen. Bernie Sanders (I-Vt.), was focused on drug prices — an issue over which the NIH has very little control.

After introducing the nominee, Monica Bertagnolli, at a hearing of the Health, Education, Labor and Pensions Committee, Sanders quickly pivoted to the high prices Americans pay for prescription drugs.

“Let me say a few words about my concerns,” he said, using his opening statement to detail the failures of the country’s “broken” health system. “Very relevant to the hearing that we are conducting right now,” he said, “we spend, as a nation, the highest prices — we pay the highest prices in the world for prescription drugs, in some cases 10 times more than the people in other nations.”

The way the hearing began — introducing issues and politics that are not necessarily on point — highlights how much the job of leading the NIH has changed. The agency has a budget of more than $47 billion, making it the largest funder of medical research in the world. But the responsibility of its director has, since the pandemic, taken on new layers of complexity.

It has become “an enormous job of bridging between the world of policy, the world of the public, and the world of science,” said Larry Levitt, executive vice president for health policy at KFF.

“Covid turned the scientific health agencies into political footballs like never before,” he said in an interview.

The nomination of Bertagnolli, a surgical oncologist and the director of the NIH’s National Cancer Institute, was applauded by much of the medical research community, especially the oncology world. But after she was tapped for the role in May, progress stalled.

The confirmation of Bertagnolli’s predecessor, Francis Collins, a physician and geneticist, took just four weeks in 2009, Sen. Tommy Tuberville (R-Ala.), observed. Bertagnolli’s, he told her, has “faced a much different nomination process. Your nomination was held up by Chairman Sanders.”

Sanders agreed to hold the hearing only after the Biden administration announced a contract with biotech company Regeneron Pharmaceuticals for a next-generation monoclonal antibody to prevent covid-19 that required the list price of any resulting drug to be equal to or lower than the price in other major countries.

During the hearing, he returned to the issue, suggesting NIH should seek more such agreements with drugmakers that depend on the agency’s research. He asked Bertagnolli if she could “commit to us that you will work to make sure that Americans do not pay higher prices for prescription drugs in this country than people around the world.”

She responded noncommittally. “It would be a great honor to be able to work with you to make sure that the American people have access to the care that they need to live long and healthy lives.”

As part of his criticism of Sanders, Tuberville also pointed out that the NIH has been without a confirmed director for 21 months. Tuberville, meanwhile, has for months been holding up nominations to military leadership positions over abortion policies.

If she’s confirmed, Bertagnolli would lead the NIH at a time of high scrutiny and skepticism of public health agencies. HELP Committee Ranking Member Bill Cassidy (R-La.) told her that part of her duty would be “to rebuild the relationship with Congress and the public, being a leader that represents the interests of all Americans and not just of the scientific community.”

To this end, senators asked Bertagnolli about how she would lead the agency’s research on maternal health and diabetes, and about how she would address both opioid addiction and mental health crises. She was pressed on how accessible NIH’s data would be to the public.

Roger Marshall (R-Kan.) asked if she thought taxpayers should “fund gender reassignment experiments.” She dodged the question, noting that transgender youth are some of the most vulnerable in the country.

Bertagnolli kept a cool tone throughout the hearing as she shared her vision of “making sure that American people have access and availability and can afford the health care that can save lives.”

Senators also questioned how well-rounded Bertagnolli’s experience is and whether she would favor the NCI over the agency’s 26 other institutes and centers. Sen. Susan Collins (R-Maine) asked Bertagnolli if she would be able to find a balance.

She explained that, as an oncologist, she “took care of patients of all ages, all walks of life, all different health states. I am very familiar to working with colleagues in cardiology, in mental health, in opioid use disorder, in kidney disease, to take care of my patients with cancer.”

The HELP Committee has scheduled a vote on Bertagnolli’s nomination Oct. 25.

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For People With Sickle Cell Disease, ERs Can Mean Life-Threatening Waits

Heather Avant always dresses up when she goes to the emergency room.

“I’ve been conditioned to act and behave in a very specific way,” said Avant. “I try to do my hair. I make sure I shower, have nice clothes. Sometimes I put on my University of Michigan shirt.”

It’s a strategy to combat discrimination the 42-year-old photographer in Mesquite, Texas, has developed over a lifetime of managing her sickle cell disease, a rare blood disorder that affects an estimated 100,000 Americans. The hereditary condition can affect a person of any race or ethnicity, but Black patients, like Avant, make up the majority of those afflicted in the U.S.

For people living with the disease, a sickle cell crisis can happen at any time. When it does, their rigid, sickle-shaped red blood cells become stuck in their blood vessels, blocking flow and causing extreme pain or breathing difficulties. A crisis can escalate into life-threatening complications such as strokes, seizures, and sepsis.

When a pain crisis can’t be managed at home, patients head to the ER to get the high dosage of opioids they need, in addition to IVs to help with dehydration or even blood transfusions. Yet staffers in emergency departments — already overextended and grappling with nursing shortages — don’t always have experience in treating the rare disease. Doctors, amid a still-raging opioid crisis, remain resistant to prescribing the painkillers necessary to treat sickle cell crises. So, patients say, they face long delays before receiving essential care, plus discrimination and suspicion that they are seeking drugs to get high.

“I have to look like I’m not coming in here off the street looking for medication,” said Avant. “I have to put on an entire show to get you to believe that I need care.”

Years of research have documented the delays. A study published in 2013 found that patients seeking care from 2003 through 2008 at an ER for their sickle cell crises waited 50% longer than patients who arrived with broken legs or arms. A study published in 2021 found that 50% of sickle cell patients reported having to wait at least two hours before their pain was treated, despite medical guidelines recommending such patients in crisis receive their first dose of pain medication no more than 60 minutes after arriving at the ER.

Medical associations such as the American Society of Hematology, the National Heart, Lung, and Blood Institute, and the Emergency Nurses Association have established guidelines for emergency department-based care of sickle cell pain. And, in 2021, the Emergency Department Sickle Cell Care Coalition, a national collaboration of hematologists, pharmacists, and nurses, helped launch a point-of-care tool to help medical professionals manage the disease in the ER.

But patients and sickle cell experts said those best practices haven’t been widely adopted. A 2020 survey of nearly 250 emergency medicine providers found that 75% of them were unaware of the NHLBI’s recommendations, first published in 2014, yet 98% felt confident in their ability to treat patients with sickle cell disease.

Still, ER horror stories abound among adults with sickle cell disease. For Lesly Chavez, 29, a Houston hairstylist, her worst experience occurred a few years ago. She said she spent four hours in a waiting room before getting seen.

“And when they finally got to me, they told me they could help with ‘my addiction,’ but they decided that there was nothing that they could do for me,” Chavez said. “They just flat-out said no and sent me home while I was in crisis.”

Chavez said she has since avoided that hospital even though it’s 10 minutes from her home. Now she drives to an ER 30 minutes away.

Chavez, who is Hispanic, said she confronts “doubt everywhere I go” because sickle cell disease primarily affects Black Americans. (Those who are Hispanic can be of any race.)

Paula Tanabe, a professor of nursing at Duke University who has spent decades researching ways to improve care for sickle cell patients, said a confluence of factors adds to the racial bias patients may face.

“Emergency rooms are incredibly overcrowded, at rates that we have never seen before, and that’s for everyone,” said Tanabe.

Legislators are trying to help. A federal bill introduced in June would allocate $8.2 million annually for five years to a program that trains doctors on best practices for caring for sickle cell patients. Another, introduced this spring, would provide funding for community organizations working to spread awareness about the condition and give student loan relief to medical providers who commit to working on the disease. Some state legislatures have established sickle cell task forces to improve physician education and care coordination.

Advocates for sickle cell patients said investment in data collection to track the disease is also important. Although the Centers for Disease Control and Prevention estimates that some 100,000 Americans have it, the true number is unknown. That’s because no national system exists to collect data on sickle cell, unlike other conditions such as diabetes, cancer, and Alzheimer’s.

“I’m 32 and we’ve been saying it’s 100,000 my entire life,” said Quannecia McCruse, who co-founded the Sickle Cell Association of Houston. “I know there’s more. I know people are going uncounted.”

Eleven state-led data collection programs currently exist and, in February, the CDC opened a new grant application for additional states. Improved data would allow funding to be allocated toward the areas with the greatest need, sickle cell patient advocates said.

Texas had an opportunity to join those efforts. This spring, the state legislature passed a bill with broad bipartisan support to create a sickle cell patient registry, but Republican Gov. Greg Abbott vetoed it, saying it would compromise patient privacy.

“That was a bad excuse,” said McCruse. “We have a cancer registry already, and everyone’s information is safe. That registry would have gone a long way to help.”

While progress grinds slowly, patients like McCruse say they’re forced to balance advocating for themselves during bouts of excruciating pain against the need not to irritate or alienate hospital staffers.

“It feels like someone is taking a Taser and shocking the crap out of me. Or when it’s really bad, and it feels like shards of glass are just moving through my veins,” said the mother of two. “It’s very, very painful. And you’re telling somebody whose body is torturing them that it’s not that bad?”

Alexis Thompson, a hematologist who treats sickle cell patients at the Children’s Hospital of Philadelphia, said she works with her pediatric patients to develop self-advocacy skills. But sometimes that backfires.

“The great irony is patients who are well informed and capable of self-advocating are being accused of being manipulative, because they are capable of articulating very clearly what’s effective for them down to the name of the medication or the absolute dose,” Thompson said.

Sickle cell experts recommend that doctors adhere to a patient’s individual pain plan, if available. Thompson said those plans, which document patients’ diagnoses alongside a recommended medication and dosage, can be uploaded to online portals that patients can pull up on their cellphones when visiting an ER to verify what they need.

Patients such as Avant hope such steps can help decrease their ER waits while easing their anxiety about seeking emergency care.

“I don’t fear dying,” said Avant, “but I do fear dying in the hospital.”

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California prohíbe el controversial diagnóstico de “delirio excitado”

SACRAMENTO, California — California es el primer estado en prohibir el diagnóstico de síndrome de “delirio excitado”. La decisión, dijo un activista de derechos humanos, representa un “momento decisivo” que hará que sea más difícil para la policía justificar el uso de fuerza excesiva.

El gobernador demócrata Gavin Newsom firmó un proyecto de ley el 8 de octubre para prohibir que los forenses, doctores, y examinadores médicos incluyeran el síndrome de “delirio excitado” (o agitado) en certificados de defunción o informes de autopsias.

Las autoridades no podrán utilizar el término para describir el comportamiento de una persona en sus informes, y en tribunales civiles no se permitirán testimonios que se refieran al síndrome. La ley entrará en vigencia en enero.

El término “delirio excitado” ha existido durante décadas, pero se ha estado utilizando cada vez más en los últimos 15 años para explicar casos de muerte súbita en personas bajo custodia policial que experimentan una gran agitación física y mental. El diagnóstico se ha citado como defensa legal en las muertes de George Floyd en 2020 en Minneapolis; Daniel Prude en Rochester, Nueva York; y Angelo Quinto en Antioch, California, entre otros.

“Este es un momento decisivo en California y en todo el país”, dijo Joanna Naples-Mitchell, abogada para la organización Physicians for Human Rights, con sede en Nueva York, y coautora de un informe de 2022 sobre el uso del diagnóstico.

“En una demanda de muerte por negligencia, la mención del síndrome de delirio agitado es un gran obstáculo para que la familia obtenga justicia si la víctima fue asesinada por la policía”, dijo Naples-Mitchell. “Ahora les resultará básicamente imposible dar testimonios sobre el síndrome en California”.

Aunque la nueva ley convierte a California en el primer estado que ya no reconoce el síndrome de “delirio excitado” como diagnóstico médico, varias asociaciones médicas nacionales ya lo habían desacreditado.

Desde 2020, tanto la Asociación Médica Estadounidense como la Asociación Americana de Psiquiatría han refutado la validez del síndrome como afección médica, señalando que el término se ha utilizado desproporcionadamente para hablar de hombres negros bajo custodia policial.

Este año, la Asociación Nacional de Examinadores Médicos rechazó el diagnóstico de delirio excitado como causa de muerte, y se espera que el Colegio Americano de Médicos de Emergencias vote este mes sobre el tema.

En 2009, la organización publicó un documento en el cual apoya el diagnóstico de “delirio excitado”, argumentando que las personas que están sufriendo una crisis mental, a menudo bajo los efectos de drogas o alcohol, pueden presentar una fuerza sobrehumana cuando la policía trata de controlarlos, y luego morir a causa de este síndrome.

En el caso de Quinto, su madre, Cassandra Quinto-Collins, había llamado a la policía de Antioch dos días antes de Navidad porque su hijo estaba pasando por una crisis de salud mental. Dijo que cuando llegaron, ella ya lo había tranquilizado, pero aún así la policía mantuvo a su hijo de 30 años en el suelo hasta que se desmayó.

En un video desgarrador tomado por Quinto-Collins, que se transmitió en todo el país después de su muerte, ella le preguntaba a la policía qué estaba pasando, mientras su hijo yacía en el suelo inconsciente, con las manos esposadas a la espalda. Angelo Quinto murió tres días después en el hospital.

La oficina forense del condado de Contra Costa, parte del departamento del sheriff, atribuyó la muerte de Quinto al “delirio excitado”. La familia Quinto presentó una demanda por muerte por negligencia contra el condado y busca cambiar la causa de muerte en su certificado de defunción.

Quinto-Collins también testificó a favor del proyecto de ley AB 360, presentado por el asambleísta estatal demócrata Mike Gipson. El proyecto fue aprobado por la legislatura con apoyo bipartidista. Ninguna organización se opuso formalmente a la medida, ni siquiera la Asociación de Jefes de Policía de California, cuyo director ejecutivo se negó a hacer comentarios.

“Hay mucho más trabajo por hacer, pero esto pone en evidencia la corrupción y las cosas que hemos permitido que sucedan ante nuestras narices”, dijo Robert Collins, el padrastro de Quinto. “El hecho de que California haya prohibido el diagnóstico es realmente revelador”.

Parte del problema con el diagnóstico de síndrome de “delirio excitado” es que el delirio es un síntoma de una afección subyacente, dicen los profesionales médicos. Por ejemplo, el delirio puede ser un síntoma de la vejez, de la hospitalización, de una cirugía importante, de la adicción, de medicamentos o de infecciones, dijo Sarah Slocum, psiquiatra de Exeter, New Hampshire, y coautora de una revisión sobre el delirio agitado publicada en 2022.

“No pondríamos ‘fiebre’ simplemente en un certificado de defunción”, dijo Slocum. “Por lo tanto, es difícil identificar ‘delirio agitado’ como causa de muerte cuando hay algo subyacente que lo impulsa”.

En California, algunas entidades ya habían restringido el uso del término, como el Departamento de Policía del Transporte Rápido de Bay Area, que prohíbe hablar de “delirio excitado” en sus informes escritos y en su manual.

Pero estos cambios confrontan décadas de condicionamiento entre las fuerzas del orden y el personal médico de emergencia, a quienes se les ha enseñado que el “delirio excitado” es real y se les ha capacitado sobre cómo actuar cuando sospechan que una persona lo padece.

“Tiene que haber un entrenamiento nuevo y sistemático”, dijo Abdul Nasser Rad, director de investigación y datos de Campaign Zero, un grupo sin fines de lucro enfocado en la reforma de la justicia penal que ayudó a redactar la ley de California. “Existe una verdadera preocupación sobre cómo se está capacitando a la policía y a los profesionales de emergencias sobre este tema”.

Esta historia fue producida por KFF Health News, que publica California Healthline, un servicio editorialmente independiente de la California Health Care Foundation.

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Listen: Inroads for Women in California’s Health Care Workforce

KFF Health News senior correspondent Angela Hart moderated a panel about women in the health care workforce for an event hosted by Capitol Weekly on Sept. 28 in Sacramento.

California faces a shortfall of health care workers, especially among women. Women account for 39% of doctors in the state, according to KFF, but are beginning to make critical gains. In 2022, the percentage of medical school graduates who were women had grown to 51% in the state while the percentage of male graduates had fallen, according to Kathryn Phillips, the California Health Care Foundation’s associate director for improving access. (KFF Health News publishes California Healthline, which is an editorially independent service of the California Health Care Foundation.)

But even as women make gains, they disproportionately hold jobs that pay less than top earners such as physicians — including nurses and community health workers — and women have fewer opportunities for career growth and leadership.

Hart delved into these issues with leading experts from the University of California-Davis’ Women in Medicine and Health Sciences program; the powerful Service Employees International Union California; the University of California-San Francisco; and the California Medical Association, which represents doctors.

According to the panelists, women bring an important perspective to health care, yet they are less represented in primary and specialty care. And as California’s population ages, young people start their families, and patients increasingly demand culturally competent care, the effort to bring more women into those fields is exploding.

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The New Vaccines and You: Americans Better Armed Than Ever Against the Winter Blechs

Last year’s “triple-demic” marked the beginning of what may be a new normal: a confluence of respiratory infections — RSV, influenza, and covid-19 — will surge as the weather cools each year.

Like blizzards, the specific timing and severity of these outbreaks are hard to forecast. But their damage can be limited in more ways than ever before. More protective vaccines against influenza are on the horizon. And new vaccines against respiratory syncytial virus, or RSV, were approved this year, as were updated covid vaccines. Although the first days of rollout for the Moderna and Pfizer vaccines saw hiccups, with short supplies at some pharmacies and billing confusion with some insurers, the shots now are generally available at no cost.

What’s more, after enduring the worst pandemic in a century, people are more attuned to protecting themselves and those around them. Wearing face masks and staying home when sick can stop the spread of most respiratory infections. The rate of flu vaccinations has climbed over the past five years.

“It seems like the pandemic reminded them of how important vaccination is,” said Brian Poole, a microbiologist at Brigham Young University in Utah. In a study of college students, Poole and other researchers found that flu vaccination rates have nearly tripled since 2007, from 12% to 31% in the respiratory infection season of 2022-23. Only a minority of students expressed “vaccine fatigue.”

There is, however, one dangerous departure from the past. Vaccination has become politicized, with college students and older adults who identify as Republican or conservative being less likely to get covid vaccines, as well as vaccinations against flu. Before 2018, studies found that political affiliation had no influence on vaccine uptake. But as measures to limit covid, such as school and church closures, became controversial, some political leaders downplayed the effects of covid — even as the pandemic’s U.S. death toll soared above 1 million.

That messaging has led to a disbelief in public health information. The Centers for Disease Control and Prevention reports data showing that covid hospitalizations nearly tripled in the latest surge, with more than 40,000 hospitalizations in the first two weeks of September compared with about 13,600 in the same period of July. But in a recent KFF poll, half of Republicans did not believe in the surge, compared with just 23% of Democrats.

Messaging to minimize the toll of covid also makes vaccines seem unnecessary, with 24% of Republicans leaning toward getting the updated covid shot versus 70% of Democrats in the KFF poll. A larger share of vaccine-eligible adults said they planned to get, or have gotten, the flu shot and a new RSV vaccine.

“It’s important to recognize that the flu, covid, and respiratory viruses still kill a lot of people, and that the vaccines against those viruses save lives,” said David Dowdy, an epidemiologist at Johns Hopkins University in Baltimore. Flu vaccines prevent up to 87,000 hospitalizations and 10,000 deaths each year in the United States. “I like to highlight that,” Dowdy added, “as opposed to making up terms like ‘triple-demic’ to make people cower in fear.”

Dowdy predicted this fall and winter will be better than the past few, when patients with covid, influenza, or RSV filled hospitals. Even so, he estimated that more people will die than in the seasons before covid appeared. About 58,000 people died from the flu last season, and hundreds of thousands more were sickened, staying home from school and work. This year, the flu doesn’t appear to be kicking off unusually early, as it did last year with cases picking up in November, rather than in January. And more people are partially immune to covid due to vaccines and prior infections.

The effectiveness of flu vaccines varies depending on how well its formula matches the virus circulating. This year’s vaccine appears more protective than last year’s, which reduced the risk of hospitalization from the flu by about 44% among adults. This year, researchers expect an effectiveness of about 52%, based on data collected during South America’s earlier flu season. Its benefit was higher for children, reducing hospitalizations by 70%.

The flu’s toll tends to be uneven among demographic groups. Over the past decade, hospitalization rates due to the flu were 1.8 times as high among Black people in the United States as among white individuals. Just 42% of Black adults were vaccinated against the flu during that period, compared with 54% of white or Asian adults. Other issues, ranging from a lack of paid sick leave and medical care to a prevalence of underlying conditions, probably contribute to this disparity. People who have asthma, diabetes, or cardiovascular issues or are immunocompromised are at higher risk of a severe case of flu.

Sean O’Leary, an infectious disease pediatrician and the chair of the American Academy of Pediatrics committee on infectious diseases, urges parents to vaccinate their kids against influenza and covid. Children hospitalized with co-infections of the two viruses last year were put on ventilators — an intense form of life support to allow them to breathe — far more often than those hospitalized for the flu alone. And covid is surging now, O’Leary said. Hospitalizations among children under age 18 increased nearly fivefold from June to September. “Almost all of our kids who have died have been completely unvaccinated” against covid, he said.

The FDA greenlighted new RSV vaccines from the pharmaceutical companies GSK and Pfizer this year. On Sept. 22, the CDC recommended that pregnant mothers get vaccinated to protect their newborns from RSV, as well as infants under 8 months old. The disease is the leading cause of hospitalization for infants in the United States. The agency also advises people age 60 and older to get the vaccine because RSV kills between 6,000 to 10,000 older adults each year.

Rather than vaccination, the CDC advised a new long-acting antibody treatment, nirsevimab, for children between 8 to 19 months old who are at risk of RSV. However, the price could be cost-prohibitive — anticipated at $300 to $500 a dose — and many hospitals lack the staff needed to administer it. Although insurers cover it, the American Academy of Pediatrics warns that reimbursement often lags for a year. “We don’t have the infrastructure in place to ensure all children can access the product,” said its president, Sandy Chung, in a statement. “And that is alarming.”

If the wrinkles can be ironed out, said Helen Chu, an infectious disease specialist at the University of Washington in Seattle, better tools could arrive as early as next year. Pfizer, Moderna, and other pharmaceutical companies are developing mRNA vaccines against influenza and RSV that may more precisely target each year’s circulating virus.

Today’s flu and RSV vaccines are produced using traditional vaccine platforms, such as within chicken eggs, that are more cumbersome to handle, and therefore the vaccines take longer to develop each year. And President Joe Biden has awarded companies $1 billion to develop covid vaccines that provide longer protection.

“The future is going to be all three vaccines together,” Chu said, “but that will be a while yet.”

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KFF Health News' 'What the Health?': Health Funding in Question in a Speaker-Less Congress

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As House Republicans struggle — again — to decide who will lead them, the clock is ticking on a short-term spending bill that keeps the federal government running only until mid-November. The turn of the fiscal year has also left key health programs in limbo, including the one that provides international aid to combat HIV and AIDS.

Meanwhile, a major investigation by The Washington Post into why U.S. life expectancy is declining found that the reasons, while many and varied, tend to point to a lesser emphasis on public health here than in many peer nations.

This week’s panelists are Julie Rovner of KFF Health News, Sarah Karlin-Smith of the Pink Sheet, Victoria Knight of Axios, and Lauren Weber of The Washington Post.

Panelists

Sarah Karlin-Smith Pink Sheet @SarahKarlin Read Sarah's stories Victoria Knight Axios @victoriaregisk Read Victoria's stories Lauren Weber The Washington Post @LaurenWeberHP Read Lauren's stories

Among the takeaways from this week’s episode:

House Republicans are choosing a new speaker with government funding still uncertain beyond Nov. 17. But some programs are already experiencing a lapse in their congressional authorizations, notably the global HIV/AIDS program known as PEPFAR — and the problems in renewing it are sending a troubling signal to the world about the United States’ commitment to a program credited with saving millions of lives.
Drug companies have entered into agreements with federal health officials for new Medicare price negotiations even as many of them challenge the process in court. Early signals from one conservative federal judge indicate the courts may not be sympathetic to the notion that drug companies are being compelled to participate in the negotiations.
Kaiser Permanente health system employees and pharmacists with major chains are among the American health care workers on strike. What do the labor strikes have in common? The outcry from workers over how staffing shortages are endangering patients, leaving overwhelmed medical personnel to manage seemingly impossible workloads.
Elsewhere in the nation, new covid-19 vaccines are proving difficult to come by, particularly for young kids. Officials point to this being the first time the vaccines are being distributed and paid for by the private sector, rather than the federal government.
Reporting shows those getting kicked off Medicaid are struggling to transition to coverage through the Affordable Care Act exchanges, even though many are eligible.

Also this week, Rovner interviews physician-author-novelist Samuel Shem, whose landmark satirical novel, “The House of God,” shook up medical training in the late 1970s. Shem’s new book, “Our Hospital,” paints a grim picture of the state of the American health care workforce in the age of covid.

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

Julie Rovner: The Atlantic’s “Virginia Could Decide the Future of the GOP’s Abortion Policy,” by Ronald Brownstein.

Sarah Karlin-Smith: The Wall Street Journal’s “Children Are Dying in Ill-Prepared Emergency Rooms Across America,” by Liz Essley-Whyte and Melanie Evans.

Lauren Weber: ProPublica’s “Philips Kept Complaints About Dangerous Breathing Machines Secret While Company Profits Soared,” by Debbie Cenziper, ProPublica; Michael D. Sallah, Michael Korsh, and Evan Robinson-Johnson, Pittsburgh Post-Gazette; and Monica Sager, Northwestern University.

Victoria Knight: KFF Health News’ “Feds Rein In Use of Predictive Software That Limits Care for Medicare Advantage Patients,” by Susan Jaffe.

Also mentioned in this week’s episode:

The Washington Post’s “Medicaid Rolls Are Being Cut. Few Are Finding Refuge in ACA Plans,” by Amy Goldstein.
The Washington Post’s “An Epidemic of Chronic Illness Is Killing Us Too Soon,” by Joel Achenbach, Dan Keating, Laurie McGinley, Akilah Johnson, and Jahi Chikwendiu.
The Washington Post’s “How Red-State Politics Are Shaving Years Off American Lives,” by Lauren Weber, Dan Diamond, and Dan Keating.
The Washington Post’s “England Considers Raising Smoking Age Until Cigarettes Are Banned Entirely,” by Andrew Jeong.

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Francis Ying Audio producer Emmarie Huetteman Editor

To hear all our podcasts, click here.

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

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