For Aida Beltré, working remotely during the pandemic came as a relief.

She was taking care of her father, now 86, who has been in and out of hospitals and rehabs after a worsening series of strokes in recent years.

Working from home for a rental property company, she could handle it. In fact, like most family caregivers during the early days of covid-19, she had to handle it. Community programs for the elderly had shut down.

Even when Beltré switched to a hybrid work role — meaning some days in the office, others at home — caring for her father was manageable, though never easy.

Then she was ordered back to the office full time in 2022. By then, Medicaid was covering 17 hours of home care a week, up from five. But that was not close to enough. Beltré, now 61, was always rushing, always worrying. There was no way she could leave her father alone so long.

She quit. “I needed to see my dad,” she said.

In theory, the national debate about remote or hybrid work is one great big teachable moment about the demands on the 53 million Americans taking care of an elderly or disabled relative.

But the “return to office” debate has centered on commuting, convenience, and child care. That fourth C, caregiving, is seldom mentioned.

That’s a missed opportunity, caregivers and their advocates say.

Employers and co-workers understand the need to take time off to care for a baby. But there’s a lot less understanding about time to care for anyone else. “We need to destigmatize it and create a culture where it’s normalized, like birth or adoption,” said Karen Kavanaugh, chief of strategic initiatives at the Rosalynn Carter Institute for Caregivers. For all the talk of cradle to grave, she said, “mostly, it’s cradle.”

After her stepmother died, Beltré moved her father into her home in Fort Myers, Florida, in 2016. His needs have multiplied, and she’s been juggling, juggling, juggling. She’s exhausted and, now, unemployed.

She’s also not alone. About one-fifth of U.S. workers are family caregivers, and nearly a third have quit a job because of their caregiving responsibilities, according to a report from the Rosalynn Carter Institute. Others cut back their hours. The Rand Corp. has estimated that caregivers lose half a trillion dollars in family income each year — an amount that’s almost certainly gone up since the report was released nearly a decade ago.

Beltré briefly had a remote job but left it. The position required sales pitches to people struggling with elder care, which she found uncomfortable. She rarely gets out — only to the grocery store and church, and even then she’s constantly checking on her dad.

“This is the story of my life,” she said.

Workplace flexibility, however desirable, is no substitute for a national long-term care policy, a viable long-term care insurance market, or paid family leave, none of which are on Washington’s radar.

President Joe Biden gave family caregivers a shoutout in his State of the Union address in February and followed up in April with an executive order aimed at supporting caregivers and incorporating their needs in planning federal programs, including Medicare and Medicaid. Last year, his Department of Health and Human Services released a National Strategy to Support Family Caregivers outlining how federal agencies can help and offering road maps for the private sector.

Although Biden checked off priorities and potential innovations, he didn’t offer any money. That would have to come from Congress. And Congress right now is locked in a battle over cutting spending, not increasing it.

So that leaves it up to families.

Remote work can’t fill all the caregiving gaps, particularly when the patient has advanced disease or dementia and needs intense round-the-clock care from a relative who is also trying to do a full-time job from the kitchen table.

But there are countless scenarios in which the option to work remotely is an enormous help.

When a disease flares up. When someone is recuperating from an injury, an operation, or a rough round of chemo. When a paid caregiver is off, or sick, or AWOL. When another family caregiver, the person who usually does the heavy lift literally or metaphorically, needs respite.

“Being able to respond to time-sensitive needs for my dad at the end of his life, and to be present with my stepmother, who was the 24/7 caregiver, was an incredible blessing,” said Gretchen Alkema, a well-known expert in aging policy who now runs a consulting firm and was able to work from her dad’s home as needed.

That flexibility is what Rose Garcia has come to appreciate, as a small-business owner and a caregiver for her husband.

Garcia’s husband and business partner, Alex Sajkovic, has Lou Gehrig’s disease. Because of his escalating needs and the damage the pandemic wrought on their San Francisco stone and porcelain design company, she downsized and redesigned the business. They cashed in his retirement fund to hire part-time caregivers. She goes to work in person sometimes, particularly to meet architects and clients, which she enjoys. The rest of the time she works from home.

As it happened, two of her employees also had caregiving obligations. Her experience, she said, made her open to doing things differently.

For one employee, a hybrid work schedule didn’t work out. She had many demands on her, plus her own serious illness, and couldn’t make her schedule mesh with Garcia’s. For the other staff member, who has a young child and an older mother, hybrid work let her keep the job.

A third worker comes in full time, Garcia said. Since he’s often alone, his dogs come too.

In Lincoln, Nebraska, Sarah Rasby was running the yoga studio she co-owned, teaching classes, and taking care of her young children. Then, at 35, her twin sister, Erin Lewis, had a sudden cardiac event that triggered an irreversible and ultimately fatal brain injury. For three heartbreaking years, her sister’s needs were intense, even when she was in a rehab center or nursing home. Rasby, their mother, and other family members spent hour after hour at her side.

Rasby, who also took on all the legal and paperwork tasks for her twin, sold the studio.

“I’m still playing catch-up from all those years of not having income,” said Rasby, now working on a graduate degree in family caregiving.

Economic stress is not unusual. Caregivers are disproportionately women. If caregivers quit or go part time, they lose pay, benefits, Social Security, and retirement savings.

“It’s really important to keep someone attached to the labor market,” the Rosalynn Carter Institute’s Kavanaugh said. Caregivers “prefer to keep working. Their financial security is diminished when they don’t — and they may lose health insurance and other benefits.”

But given the high cost of home care, the sparse insurance coverage for it, and the persistent workforce shortages in home health and adult day programs, caregivers often feel they have no choice but to leave their jobs.

At the same time, though, more employers, facing a competitive labor market, are realizing that flexibility regarding remote or hybrid work helps attract and retain workers. Big consultant companies like BCG offer advice on “the working caregiver.”

Successful remote work during the pandemic has undercut bosses’ abilities to claim, “You can’t do your job like that,” observed Rita Choula, director of caregiving for the AARP Public Policy Institute. It’s been more common in recent years for employers to offer policies that help workers with child care. Choula wants to see them expanded “so that they represent a broad range of caregiving that occurs across life.”

Yet, even with covid’s reframing of in-person work, telecommuting is still not the norm. A March report from the Bureau of Labor Statistics found only 1 in 4 private businesses had some or all of their workforce remote last summer — a dropoff from 40% in 2021, the second pandemic summer. Only about 1 in 10 workplaces are fully remote.

And remote and hybrid work is mostly for people whose jobs are largely computer-based. A restaurant server can’t refill a coffee cup via Zoom. An assembly line worker can’t weld a car part from her father-in-law’s bedside.

But even in the service and manufacturing sectors, willing employers can explore creative solutions, like modified shift schedules or job shares, said Kavanaugh, who is running pilot programs with businesses in Michigan. Cross-training so workers can fill in for one another when one has to step into caregiving is another strategy.

New approaches can’t come soon enough for Aida Beltré, who finds joy in caregiving along with the burden. She’s looking for work, hybrid this time. “I am a people person,” she said. “I need to get out.”

She also needs to be in. “Every night, he says, ‘Thank you for all you do,’” she said of her father. “I tell him, ‘I do this because I love you.’”

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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Readout of HHS Secretary Xavier Becerra’s Visit to Brussels, Belgium, for EU Health Meetings

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.

The fate of the abortion pill mifepristone remains in jeopardy, as an appellate court panel during a hearing this week sounded sympathetic to a lower court’s ruling that the FDA should not have approved the drug more than two decades ago. No matter how the appeals court rules, the case seems headed for the Supreme Court.

Meanwhile, in the partisan standoff over raising the nation’s debt ceiling, a key sticking point has emerged: whether to add a work requirement to the state-federal Medicaid program. Republicans are adamant about adding one; Democrats point out that, in the few states that have tried them, red tape has resulted in eligible people wrongly losing their health coverage.

This week’s panelists are Julie Rovner of KFF Health News, Sandhya Raman of CQ Roll Call, Rachel Roubein of The Washington Post, and Victoria Knight of Axios.

Panelists Sandhya Raman CQ Roll Call @SandhyaWrites Read Sandhya's stories Rachel Roubein The Washington Post @rachel_roubein Read Rachel's stories Victoria Knight Axios @victoriaregisk Read Victoria's stories

Among the takeaways from this week’s episode:

• Hopes among abortion rights advocates for continued access to mifepristone dimmed as the three judges on the 5th Circuit Court of Appeals signaled they are skeptical of the FDA’s decades-old approval of the drug and of the Biden administration’s arguments defending it. Lawyers debated whether the Texas doctors challenging the drug had been harmed by it and thus had standing to sue. If the original ruling effectively revoking the drug’s approval is allowed to stand, the case could open the door to future legal challenges to the approval of controversial drugs.
• Two more states in the South are moving to restrict abortion, further cutting access to the procedure in the region. In North Carolina, a new Republican supermajority in the state legislature enabled the passage this week of a new, 12-week ban, as lawmakers in South Carolina consider a six-week ban.
• In Congress, the top Senate Republican said he will not back one senator’s months-long effort to hold up Pentagon nominations over a policy that supports troops and their dependents who must travel to other states to obtain an abortion.
• Envision Healthcare — which spent big in 2019 to fight legislation prohibiting some surprise medical bills — has filed for bankruptcy protection more than a year after the law took effect and cut into its bottom line. But a federal lawsuit from a group of emergency room physicians against Envision may move forward. The lawsuit claims the private equity-backed company is in violation of a California law banning corporate control of medical practices, and it could carry major consequences for the growing number of practices backed by private equity firms across the country.
• Monica Bertagnolli has been nominated to lead the National Institutes of Health. Currently the director of the National Cancer Institute, she will need to be confirmed by the Senate, which hasn’t confirmed an NIH chief since before the passage of the Affordable Care Act in 2010. Meanwhile, Sen. Bernie Sanders’ stewardship of a key health committee is causing delays on even bipartisan efforts.

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 “A 150-Year-Old Law Could Help Determine the Fate of U.S. Abortion Access,” by Dan Diamond and Ann E. Marimow.

Victoria Knight: The New York Times’ “World Health Organization Warns Against Using Artificial Sweeteners,” by April Rubin.

Rachel Roubein: CBS News’ “Thousands Face Medicaid Whiplash in South Dakota and North Carolina,” by Arielle Zionts of KFF Health News.

Sandhya Raman: CQ Roll Call’s “A Year After Dobbs Leak, Democrats Still See Abortion Driving 2024 Voters,” by Mary Ellen McIntire and Daniela Altimari.

Also mentioned in this week’s episode:

KFF Health News’ “ER Doctors Vow to Pursue Case Against Envision Despite Bankruptcy,” by Bernard J. Wolfson.

Credits Francis Ying Audio producer Emmarie Huetteman Editor

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Fact Sheet: HHS Provides Resources on Ways Communities Can Stay Protected from Mpox in Advance of Summer Months:

A three-judge panel comprising Judges James Ho and Cory Wilson, appointed by then-President Donald Trump, and Judge Jennifer Walker Elrod, appointed by then-President George W. Bush, on Wednesday appeared to support claims that the conscience and religious rights of anti-abortion physicians are harmed by the FDA’s nearly 23-year-old approval of mifepristone.

Ho rebuffed attorneys for the Department of Justice and Danco Laboratories, a maker of mifepristone, urging a focus on “the facts of this case” rather than “this sort of ‘FDA can do no wrong’ theme.” He questioned whether the FDA erred in approving the medication through an expedited process typically reserved for treatments for serious illnesses. “Pregnancy is not a serious illness” he said. “When we celebrated Mother’s Day, were we celebrating illness?”

KFF Health News senior correspondent Sarah Varney joined PBS NewsHour’s Geoff Bennett and Stephen Vladeck, a professor at the University of Texas School of Law, to discuss the legal arguments that piqued the judges’ interest and how the case could affect the availability of mifepristone around the country.

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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La cobertura de Medicare para las pruebas caseras de covid-19 finalizó hace pocos días, pero las estafas generadas por este beneficio temporal podrían tener consecuencias persistentes para las personas mayores.

Los defensores de Medicare que realizan un seguimiento del fraude han observado un aumento de quejas entre los beneficiarios que recibieron pruebas que nunca solicitaron.

Una señal de que alguien podría estar utilizando (y podría seguir haciéndolo) la información de Medicare para facturar ilegalmente al gobierno federal.

La Oficina del Inspector General (OIG) del Departamento de Salud y Servicios Humanos ha recibido quejas de todo el país sobre pruebas facturadas a Medicare que nunca se pidieron, según declaró un investigador.

A principios de este año, la OIG publicó una advertencia de fraude en su sitio web, instando a los consumidores a denunciar toda estafa relacionada con covid.

“Desgraciadamente, la mayoría de estas estafas son el resultado del robo de información de beneficiarios de Medicare”, dijo Scott Lampert, inspector general adjunto de investigaciones, a KFF Health News.

El hecho de haber sido objeto de estafa una vez hace que esa persona sea más vulnerable en el futuro.

Un número de Medicare robado puede utilizarse repetidamente para obtener pagos por todo tipo de cosas, o venderse a otros estafadores, dijo María Álvarez, que supervisa la Senior Medicare Patrol del estado de Nueva York, parte de un programa nacional que ayuda a identificar y educar a los beneficiarios sobre el fraude a Medicare.

“Si tienes el número de Medicare de alguien, puedes facturar a Medicare por procedimientos, pruebas, medicamentos, servicios y equipos médicos”, explicó Álvarez. “En la web profunda (dark web), los números de Medicare son más valiosos que los de las tarjetas de crédito o el Seguro Social”.

Un beneficiario de Indiana sospechó que algo iba mal cuando recibió 32 resultados de pruebas no solicitadas en un período de 10 días, contó Nancy Moore, directora del programa estatal Senior Medicare Patrol.

Ninguna de las personas que presentaron una queja recordaba haber dado su número de Medicare, añadió Moore.

En Ohio, Medicare pagó por pruebas que beneficiarios nunca recibieron, señaló Lisa Dalga, gerente estatal de Senior Medicare Patrol.

“La información es la mercancía del siglo XXI”, apuntó Moore, quien recomienda a los beneficiarios proteger sus números de Medicare.

Junto con los de Nueva York, Indiana y Ohio, los directores de las Senior Medicare Patrol de Tennessee, Texas y Utah dijeron a KFF Health News que habían observado un aumento de quejas sobre pruebas no deseadas a medida que se acercaba la fecha límite del beneficio.

Álvarez observó que últimamente los proveedores de pruebas se habían “vuelto más agresivos”, llamando y enviando correos electrónicos a personas mayores —algo que no hacen los representantes legítimos de Medicare—, además de publicar anuncios engañosos en Internet.

Cuando el 11 de mayo finalizó la emergencia de salud pública por covid-19, Medicare dejó de pagar las pruebas sin receta, aunque sigue cubriendo las que se realizan en una clínica, consultorio médico o en otro centro de salud y son procesadas por un laboratorio.

Algunos planes privados de Medicare Advantage pueden seguir pagando las pruebas a domicilio.

Medicare gastó $900,800 millones en proporcionar cobertura sanitaria a 64 millones de beneficiarios en 2021. Pero el programa pierde hasta $90,000 millones al año por reclamos fraudulentos. Algunas de las estafas más conocidas han involucrado equipos médicos como sillas de ruedas eléctricas.

Sara Lonardo, vocera de los Centros de Servicios de Medicare y Medicaid (CSM), confirmó que Medicare recibió quejas sobre pruebas no solicitadas, pero dijo que procedían sólo de “una pequeña parte” de los beneficiarios de Medicare que recibieron pruebas.

El año pasado, la administración del presidente Joe Biden ofreció a todos los hogares un número limitado de pruebas caseras gratuitas, aumentando el acceso a las pruebas como parte de su esfuerzo para combatir covid-19.

Más tarde, en abril de 2022, los CMS decidieron pagar ocho pruebas al mes a quienes tuvieran cobertura ambulatoria de la Parte B de Medicare, millones de personas mayores, uno de los grupos más susceptibles a morir a causa del virus. Era la primera vez que la agencia accedía a cubrir los productos sin receta y de venta libre sin costo alguno para los beneficiarios.

En un comunicado del mes pasado, autoridades policiales federales afirmaron que “los infractores supuestamente intentaron aprovecharse del programa suministrando repetidamente a los pacientes o, en algunos casos, a pacientes fallecidos, docenas de pruebas de covid-19 que no querían ni necesitaban”.

Hasta ahora, los fiscales del Departamento de Justicia sólo han confirmado un caso relacionado con la estafa de las pruebas.

Un médico de Florida y un proveedor de pruebas de Georgia han sido acusados de pagar ilegalmente a una empresa de marketing de Virginia no identificada unos $85,000 para obtener los números “de miles de beneficiarios de Medicare en todo Estados Unidos”, según una denuncia presentada por el Departamento de Justicia en abril y obtenida por KFF Health News.

La denuncia alegaba que esta dupla presentó más de $8,4 millones en reclamos fraudulentos por pruebas de covid “independientemente de si los beneficiarios de Medicare habían solicitado o necesitaban las pruebas”.

Lampert no quiso decir cuántos reclamos recibió la OIG, y agregó: “Puede haber o no otras investigaciones en curso de las que no podemos hablar todavía”.

Los detalles de varios avisos a los beneficiarios sobre los servicios recibidos, obtenidos por KFF Health News, muestran que Medicare pagó a los proveedores $94,08 por pruebas caseras de covid utilizando un código de facturación para “una sola prueba”.

La mayoría de las farmacias minoristas venden un paquete de dos pruebas por unos $24.

Lonardo dijo que Medicare pagó hasta $12 para una prueba y que el número de pruebas cubiertas se limitó para reducir “el riesgo de facturación abusiva”. No explicó por qué los resúmenes de Medicare indicaban un pago de $94,08.

Los beneficiarios pueden ser los mejores detectives contra el fraude para prevenir el robo de identidad médica. Los programas Senior Medicare Patrol los animan a revisar los resúmenes de  prestaciones para detectar cualquier artículo o servicio que Medicare haya pagado pero que ellos nunca hayan recibido.

Si Medicare ha pagado un artículo una vez, aunque haya sido un fraude, es posible que los beneficiarios no puedan obtenerlo cuando realmente lo necesiten.

Diane Borton, de 72 años, de New Smyrna Beach, Florida, ha tirado a la basura algunas de las pruebas caducadas que recibió y que nunca había pedido, pero aún le quedan 25. Dice que llamó dos veces a la línea de ayuda 1-800-MEDICARE sobre los tests no deseados, pero le dijeron que no se podía hacer nada.

Borton no pagó por las pruebas, pero no es eso lo que le preocupa. “No quiero que mi gobierno pague por algo que no voy a usar y que no he pedido”, explicó. “Me parece un despilfarro de dinero”.

Las personas con Medicare o planes privados de Medicare Advantage que reciben suministros médicos que no pidieron pueden ponerse en contacto con el Senior Medicare Patrol Resource Center llamando al 1-877-808-2468.

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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New resources and proposed regulations advance Administration’s commitment to expanding health care access and fighting youth mental health crisis

Until recently, Jonathon Murray relied on Medicaid to pay for treatments for multiple health conditions, including chronic insomnia. Murray, a 20-year-old restaurant worker from the college town of Brookings, South Dakota, said that without his medication, he would stay awake for several nights in a row.

“I’d probably not be able to work that much because I’d be tired but couldn’t fall asleep,” he said.

Murray’s mother is paying $1,548 more than usual in health insurance premiums over three months to make sure he can afford his sleeping pills, other medication, lab work, and doctors’ appointments.

Murray had to scramble to find an insurance option after he was surprised to lose his Medicaid coverage on April 1 — even though he will likely requalify July 1.

Due to a convoluted situation in South Dakota and North Carolina, Murray isn’t the only person who will experience this whiplash in Medicaid coverage.

Medicaid is the joint federal and state health insurance program for people with low incomes or disabilities. During the national covid-19 public health emergency, states were barred from removing people from the program even if they no longer qualified.

This rule has now ended, and states can redetermine whether Medicaid participants still qualify. The federal government estimates 15 million Americans will lose coverage under Medicaid or the Children’s Health Insurance Program because they no longer qualify or because of paperwork issues.

But as South Dakota and North Carolina remove participants from Medicaid, the states also plan to add people to the program. That’s because South Dakota voters and North Carolina lawmakers recently approved Medicaid expansion, which will increase the number of people eligible for the program.

“It would have been great if they would have kept people on until the expansion, so you’re not kicking so many people off,” said Kathy Murray, Jonathon’s mother.

South Dakota could have tried to prevent participants from temporarily losing Medicaid coverage, according to several health policy experts.

State officials are “saying federal regulations mean that they have to kick people off before expansion, and that’s just not right,” said Joan Alker, executive director of the Center for Children and Families at Georgetown University. “They absolutely could be structuring this in a way that those people didn’t experience a loss in coverage.”

Lucy Dagneau, head of Medicaid campaigns for the American Cancer Society Cancer Action Network, agreed. South Dakota and North Carolina “can’t actually stop the process of the unwinding. However, they have flexibility in terms of how they batch the enrollees,” she said.

Alker and Dagneau said states don’t have to start the unwinding process right away, and when they do, they could delay reviewing enrollees who are likely to requalify under expansion.

South Dakotans and North Carolinians who want to avoid a gap in health care coverage can apply for private insurance, which could be subsidized under the Affordable Care Act. They could then reapply for Medicaid once applications for expansion coverage begin. But if they wind up uninsured during the gap period, they might avoid seeking treatment or face expensive bills.

South Dakota is one of five states that began culling April 1, the earliest date possible. Its Medicaid expansion goes into effect July 1. About 16,000 South Dakotans were disenrolled in April, but more than 1,700 of them will requalify under expansion, according to state data.

North Carolina will begin disenrolling people who are no longer eligible for Medicaid on July 1. The state has not set a timeline for Medicaid expansion, but it’s expected to occur within the unwinding period, which lasts through May 2024.

Jay Ludlam, deputy secretary of North Carolina’s Medicaid program, said the uncertain timing makes it difficult to avoid temporarily disenrolling people. Ludlam said about 300,000 North Carolinians are expected to be removed from Medicaid during the unwinding. He estimated one-third of them will requalify after expansion.

Kathy Murray added Jonathon to her workplace insurance plan, which will more than double her premiums over the intervening months. She said she won’t be able to pay some other bills during this time, but her son can’t go without health care.

She said South Dakota’s approach seems inefficient, since state workers will have to disenroll and reenroll some people within a short period. “It’s creating a lot of work for the state workers because they’re going to send out paperwork and requalify everybody,” she said.

Matt Althoff, secretary of the South Dakota Department of Social Services, said that the agency’s unwinding plan is “based on compliance with CMS rules, limitations of the technology used to support South Dakota Medicaid, and the overall impact to customers.”

The agency wrote in a March document that it was working closely with the federal Centers for Medicare & Medicaid Services “to explore waivers and flexibilities during the period of the unwinding prior to expansion and will continue to do so.”

Althoff did not respond when asked by KFF Health News whether the state had discussions with the federal agency about avoiding temporary disenrollments. Sara Lonardo, press secretary for CMS, said the agency could not comment on whether it had any related conversations with South Dakota or North Carolina officials.

Although South Dakota won’t prevent people likely to requalify for Medicaid from temporarily losing coverage, it is taking steps to make sure they know to reapply.

The state is screening people who no longer qualify for Medicaid under the current rules to see if they would requalify after Medicaid expansion. If so, they should be sent letters encouraging them to reapply.

Since 2014, the Affordable Care Act has allowed states to offer Medicaid coverage to more people, with the federal government paying 90% of the costs. All but 10 states have opted into Medicaid expansion.

South Dakota adults currently qualify for Medicaid if they have a certified disability or have children and incomes up to 46% of the federal poverty level. That translates to $13,800 for a family of four.

Jonathon Murray qualified for Medicaid as a child. But he became an adult during the public health emergency and thus no longer qualifies.

Medicaid expansion will allow adults, with or without children, to enroll in the program if they earn up to 138% of the federal poverty level, or $20,120 for a single adult. Murray’s income as a part-time restaurant cook and dishwasher should allow him to requalify and begin receiving Medicaid coverage on July 1.

Get Covered South Dakota helps people understand and apply for health care insurance. So far, everyone the organization has assisted after being disenrolled from Medicaid has qualified for subsidized private plans under the Affordable Care Act’s marketplace, according to program manager Penny Kelley. For people with low incomes, the subsidies can cover most or all of their premiums.

South Dakota Voices for Peace, a nonprofit agency, is assisting people with the Medicaid unwinding and expansion process. Carla Graciano, its outreach coordinator, said many people are confused about the unwinding process after not having to worry about health coverage for more than three years during the public health emergency.

“We have heard concerns about people potentially losing their medical coverage,” Graciano said. “It puts a lot of people under stress.”

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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Medicare coverage for at-home covid-19 tests ended last week, but the scams spawned by the temporary pandemic benefit could have lingering consequences for seniors.

Medicare advocates around the country who track fraud noticed an eleventh-hour rise in complaints from beneficiaries who received tests — sometimes by the dozen — that they never requested. It’s a signal that someone may have been using, and could continue to use, seniors’ Medicare information to improperly bill the federal government.

The U.S. Department of Health and Human Services’ Office of Inspector General has received complaints from around the country about unsolicited tests being billed to Medicare, said a top investigator. Earlier this year, the office posted a fraud warning on its website, urging consumers to report this and other covid-related scams.

“Unfortunately, most of these schemes are the result of bad actors receiving stolen Medicare beneficiary information,” Scott Lampert, assistant inspector general for investigations, told KFF Health News.

Being targeted once can mean a person is vulnerable to future scams. A stolen Medicare number can be used repeatedly to get payment for all kinds of things or sold to other fraudsters, said María Alvarez, who oversees New York state’s Senior Medicare Patrol. The organization helps identify and educate beneficiaries about Medicare fraud throughout the country.

“If you have someone’s Medicare number, you can bill Medicare for procedures, tests, drugs, services, and durable medical equipment,” Alvarez said. “On the dark web, Medicare numbers are more valuable than credit card or Social Security numbers.”

One beneficiary in Indiana suspected something was amiss after receiving 32 unrequested tests over a 10-day period, said Nancy Moore, the Senior Medicare Patrol program director for Indiana. None of the people who submitted a complaint recalled giving out their Medicare number, she said.

In another variation of the problem, Medicare paid for tests for some Ohio beneficiaries who never received them, said Lisa Dalga, project manager for Ohio’s Senior Medicare Patrol.

“Information is the commodity of the 21st century,” said Moore, who said she urges beneficiaries to guard their Medicare numbers.

It is possible that some unwanted packages were a mistake, after pharmacies or other suppliers turned a one-time request into a continuing monthly order, a switch allowed under the program’s rules that beneficiaries were responsible for correcting.

Along with those from New York, Indiana, and Ohio, Senior Medicare Patrol directors in Tennessee, Texas, and Utah told KFF Health News they noted a rise in complaints about the unwanted tests as the benefit’s cutoff date approached.

Alvarez said lately test suppliers had “gotten more aggressive,” calling and emailing seniors — something legitimate Medicare representatives do not do — as well as running misleading internet ads.

When the covid-19 public health emergency ended on May 11, Medicare stopped paying for over-the-counter tests, though it continues to cover those provided in a clinic, doctor’s office, or other health care setting and processed by a laboratory. Some private Medicare Advantage plans may continue paying for the at-home tests.

Medicare spent $900.8 billion providing health coverage to 64 million beneficiaries in 2021. But the program loses as much as $90 billion a year to fraudulent claims. Some of the more well-known scams have involved medical equipment like power wheelchairs.

Sara Lonardo, a spokesperson for the Centers for Medicare & Medicaid Services, confirmed Medicare received complaints about unwanted tests but said they came from only “a small portion” of Medicare beneficiaries who received tests.

Last year, President Joe Biden’s administration offered all households a limited number of at-home tests for free, increasing access to testing as part of its effort to combat covid-19.

A few months later, in April 2022, CMS decided to pay for eight tests per month for those with Medicare Part B outpatient coverage, including tens of millions of seniors, one of the groups most susceptible to severe illness and death from the virus. It was the first time the agency agreed to cover non-prescription, over-the-counter products at no cost to beneficiaries.

In a statement last month, federal law enforcement officials said “wrongdoers allegedly sought to exploit the program by repeatedly supplying patients or, in some instances, deceased patients, with dozens of COVID-19 tests that they did not want or need.”

So far, prosecutors at the Department of Justice have confirmed only one case involving the testing scam. A doctor in Florida and a test supplier in Georgia face charges after they were accused of illegally paying an unnamed Virginia marketing company approximately $85,000 to obtain beneficiary numbers “for thousands of Medicare beneficiaries throughout the United States,” according to an indictment filed by the Department of Justice last month and obtained by KFF Health News.

The indictment said the pair submitted more than $8.4 million in fraudulent claims for covid tests “regardless of whether the Medicare beneficiaries had requested or needed the tests.”

Lampert declined to say how many complaints the OIG had received, adding, “There may or may not be some other ongoing investigations that we just cannot discuss yet.”

The details of several Medicare Summary Notices — quarterly statements of services beneficiaries received — obtained by KFF Health News show Medicare paid suppliers $94.08 for at-home covid testing using a billing code for “a single test.” Most retail pharmacies sell a two-pack of tests for about $24.

Lonardo said Medicare paid up to $12 for one test and that the number of covered tests was limited to reduce “the risk of abusive billing.” She declined to explain why the Medicare Summary Notices indicated a payment of $94.08.

Beneficiaries may be the best fraud detectives for preventing medical identity theft. Senior Medicare Patrol programs encourage them to look for any items on their benefits statements — like back braces and lab tests — that Medicare paid for but that they never received.

If Medicare has paid for an item once, beneficiaries may not be able to get it when they really need it — regardless of whether they actually received it.

Diane Borton, a 72-year-old from New Smyrna Beach, Fla., has thrown out some of the expired tests she received but never asked for, yet she still has 25 tests. She said she called the 1-800-MEDICARE helpline twice about the unwanted packages but was told nothing could be done to stop them.

Borton didn’t pay for her supply, but that’s not why she’s concerned. “I don’t want my government paying for something that I’m not going to use and I didn’t ask for,” she said. “I feel like it is such a waste of money.”

People with Medicare or private Medicare Advantage plans who receive medical supplies they didn’t order can contact the Senior Medicare Patrol Resource Center at 1-877-808-2468.

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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Press release for HHS Announces Additional $200 Million in Funding for 988 Suicide & Crisis Lifeline

Commissioner for Health and Food Safety Stella Kyriakides and HHS Secretary Xavier Becerra met in Brussels to launch the EU-U.S. Health Task Force.

David and Adair Keller started their married life together in 1977 at Camp Lejeune, a military training base on the Atlantic Coast in Jacksonville, North Carolina. David was a Marine Corps field artillery officer then, and they lived together on the base for about six months.

But that sojourn had an outsize impact on their lives.

Forty years later, in January 2018, Adair was diagnosed with acute myeloid leukemia. She died six months later at age 68. There’s a chance her illness was caused by toxic chemicals that seeped into the water military families at the base drank, cooked with, and washed with for decades.

When the PACT Act passed last August, David asked a neighbor who worked at a personal injury law firm in Greenville, South Carolina, if he thought he might have a case. Now Keller is filing a wrongful death claim against the federal government under a section of that measure that allows veterans, their family members, and others who spent at least 30 days at Camp Lejeune between Aug. 1, 1953, and the end of 1987 to seek damages against the government for harm caused by exposure to the toxic water.

The Camp Lejeune Justice Act didn’t attract the spotlight as the aspects of PACT that deal with the harms soldiers experienced from burn pit fumes overseas did. But for veterans who served at this North Carolina post, it is the realization of a decades-long effort to hold the government accountable.

As cases begin to proceed through the legal system, some veterans’ advocates worry that families who have already suffered from toxic exposure may get shortchanged by a process that’s supposed to provide them with a measure of closure and financial relief. They support limiting lawyers’ fees, some of which may exceed half of a veteran’s award.

The government estimates as many as a million people were exposed to Camp Lejeune’s contaminated water during the 34-year period covered by the law. Personal injury lawyers have taken notice. In recent months, TV ads trying to drum up business have been impossible to ignore: “If you or a loved one were stationed at Camp Lejeune between 1953 and 1987 and developed cancer, call now. You may be entitled to significant compensation.”

During the year that ended in March, TV ads soliciting Camp Lejeune claims reached an estimated $123 million, according to X Ante, a company that tracks mass tort litigation advertising. Camp Lejeune TV ads currently rank third among the top targets for mass tort claims since 2012, behind only asbestos and mesothelioma ($619 million) and Roundup weed killer ($132 million).

“The attorneys have calculated out that they stand to make a pot of money,” said Autrey James, chairman of the American Legion’s Veterans Affairs & Rehabilitation Commission. “We need Congress to put caps on how much these attorneys can charge.”

For Keller, a 73-year-old former workers’ compensation lawyer, it’s a matter of accountability. Because of his experience, he came out of retirement last year to represent Camp Lejeune victims. He is now working part time at the Greenville law firm he spoke with originally and that now represents his late wife. It currently has roughly 65 Camp Lejeune cases.

Under the law, veterans must first file an administrative claim with the Judge Advocate General of the Navy’s Tort Claims Unit. If, after six months, the Navy hasn’t settled the claim, or if it denies the claim, veterans can file suit in the U.S. District Court for the Eastern District of North Carolina.

So far, approximately 23,000 claims have been filed with the Navy, none of which have been fully adjudicated, said Patricia Babb, a spokesperson for the Judge Advocate General’s office.

This legal remedy has been a long time coming. In the early 1980s, the Marine Corps learned that three of Camp Lejeune’s water distribution systems were contaminated with industrial chemicals that had seeped into the water from leaking underground storage tanks, industrial spills, and waste disposal sites. The Corps shut them down in the mid-1980s and the area was declared a hazardous waste site in 1989 under the Environmental Protection Agency’s Superfund law.

Federal studies later showed that toxic chemicals in the water — benzene, vinyl chloride, and TCE, among others — were present at levels that could have caused a range of cancers and other serious illnesses. In 2012, after an intense lobbying campaign by veterans, Congress passed a law that gave veterans and their families free medical care if they got sick with any of more than a dozen diseases associated with the toxic water.

But thousands of veterans who felt the Navy had stonewalled and delayed addressing the contamination filed civil suits seeking damages. In 2019, the federal government denied all the claims, citing state and federal statutes that shielded the government.

The Camp Lejeune Justice Act opened a two-year window for veterans and their families to pursue cases against the federal government.

And Liz Hartman, commander of American Legion Post 539 in nearby New Bern, now sees new reason for alarm. Some veterans are signing contingency fee contracts in which they agree to pay lawyers representing them 40% to 60% of any money they receive, Hartman said.

“Many of these people are elderly and very vulnerable, and they’re being preyed upon,” she said.

Personal injury lawyers generally work on a contingency basis. If they win the case, they receive a portion of the award, often one-third. If they lose, they get nothing. The firm Keller is working with charges 40% for Camp Lejeune cases.

If anything, fees for the Camp Lejeune cases should be lower than usual, not higher, said Matt Webb, senior vice president for legal reform policy at the U.S. Chamber of Commerce Institute for Legal Reform.

“The PACT Act changed the burden of proof and made it so much easier for claimants to win their cases,” he said. Under the law, the evidence must show that the exposure was as likely as not to have caused the harm, rather than having to prove that there’s a greater than 50% chance that the claim is true, called a “preponderance” standard.

In addition, the law requires that any award a veteran receives be offset by any amount they received in a disability payment or health benefit related to their condition. This could substantially reduce the amount of their award.

Veterans “could end up owing money,” Webb said. “I’m not saying it’s going to happen, but particularly if a lawyer is taking a huge chunk in fees, it could happen.”

Trial lawyers say a marginally lower burden of proof doesn’t mean the cases will be easy to win.

It’s a new law with no case law or judicial opinions to refer to, said Mike Cox, a Livonia, Michigan, lawyer and former Marine infantryman who was stationed at Camp Lejeune in the early 1980s. He’s now representing more than 200 veterans in such cases.

Many of the diseases and conditions people developed are not among those the government acknowledges may be linked to the contaminated water, Cox said. Even for veterans whose illnesses are recognized by the government, lawyers will have to show where they were based, what kind of cancer they have, and their level of toxic exposure, he said. His fee for representing these veterans is 33% of any award they receive.

In addition to proving they were stationed at Camp Lejeune during the years covered by the law, “the claimant also must demonstrate to the Navy he/she is suffering from an injury that is related to the exposure to (or ingestion of) contaminated water,” said Babb, the Judge Advocate General spokesperson.

With stories circulating of attorney contingency fees that could potentially eat up more than half of veterans’ awards, some lawmakers have stepped in.

Under a bill proposed by Reps. Jerrold Nadler (D-N.Y.) and Mark Takano (D-Calif.), Camp Lejeune attorney fees would be capped at 20% in cases settled as administrative claims and 33.3% in those filed as civil lawsuits in court.

Another House proposal, introduced by Reps. Darrell Issa (R-Calif.) and Mike Bost (R-Ill.), is identical to one introduced in the Senate by Sen. Dan Sullivan (R-Alaska), which would cap fees at 12% and 17% under similar circumstances.

According to David Keller, based on his conversations with other lawyers, “nobody is objecting to something that is reasonable,” such as caps at 20% and 33%.

Many of Keller’s clients are older men who are really sick and probably won’t live long, he said. Some tell him they’re reluctant to sue the government.

“What I say to them is, ‘When we signed the contract with Uncle Sam, we gave Uncle Sam a blank check for our arms, our legs, and maybe even our lives. But we didn’t sign a blank check to get a serious disease from contaminated water,’ either them or their spouses or children.”

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Many of the unhoused people in Portland, Oregon, live in tents pitched on sidewalks or in aging campers parked in small convoys behind grocery stores.

Mental illness can be part of the story of how a person ends up homeless — or part of the price of survival on the streets, where sleep and safety are scarce. Homeless people in Multnomah County, which includes Portland, die about 30 years earlier than the average American. These grim realities have ratcheted up the pressure on politicians to do something.

High housing costs and financial adversity are among the root causes of the burgeoning population on the streets.

About 1 in 3 people who are homeless in Portland report having a mental illness or a substance use disorder, and the combination of homelessness and substance use or untreated mental illness has led to very public tragedies.

People with schizophrenia, for example, have died of hypothermia on the city’s streets. One resident gave birth in a snowstorm to a stillborn infant. Methamphetamine, cheaper and more potent than it used to be, is creating a heightened risk of overdose and psychosis.

In Oregon, some politicians, including Portland Mayor Ted Wheeler, have proposed changing the civil commitment law so doctors have more leeway in compelling treatment for patients too sick to know they need care. Without such changes, they argue, people with untreated addictions or mental illnesses are stuck cycling between the streets, county jails, and state psychiatric hospitals.

“I think we can do better by people than allowing them to flounder,” said Janelle Bynum, a state legislator who represents suburbs southeast of Portland.

Bynum, a Democrat, signed on to a pair of bills, introduced by Republicans this year, that would expand the criteria for involuntary commitment in Oregon.

“My intention was to signal how cruel I think our current system is,” she said.

Half of the country’s unsheltered people live in California, and though only about a quarter to a third of homeless people are estimated to have a serious mental illness, they are the ones other residents are likely to encounter in California’s cities. Mayors from San Francisco, San Jose, and San Diego have all expressed frustration that the threshold for psychiatric intervention is so high.

‘Why Aren’t You Doing Something?’

“When I’m often asked, ‘Mayor, why aren’t you doing something about this person who is screaming at the top of their lungs on the street corner?’ and I said, ‘Well, they’re not a threat to themselves or to others,’ that rings hollow,” said Todd Gloria, mayor of San Diego.

Now, state lawmakers in Sacramento, backed by mayors, have introduced laws and bills that would help bring more people into treatment, even against their will.

Last year, legislators approved a new approach to mental health care — called CARE Court — that allows judges to issue treatment plans for people with certain diagnoses. That program begins on a pilot basis this fall in seven counties, including San Diego and San Francisco counties, with the rest of the state expected to join next year.

This year, a bill moving through the legislature would expand who qualifies for a conservatorship or involuntary psychiatric hold.

The bill is gathering support and sponsors are optimistic that Democratic Gov. Gavin Newsom will sign it if it passes. But it’s been controversial: Opponents fear a return to bygone policies of locking people up just for being sick.

Half a century ago, California policymakers shuttered state psychiatric institutions, denouncing them as inhumane. Involuntary commitment was de-emphasized, and state laws ensured that it was used only as a last resort. The thinking was that the patient should have autonomy and participate in their care.

But politicians across California are now reconsidering involuntary commitments. They argue that not helping people who are seriously ill and living in squalor on the streets is inhumane. Psychiatrists who support the bill say it would constitute a modest update to a 56-year-old law.

The shift is dividing liberals over the very meaning of compassion and which rights should take precedence: civil rights like freedom of movement and medical consent, or the right to appropriate medical care in a crisis?

“The status quo has forced too many of our loved ones to die with their rights on,” said Teresa Pasquini, an activist with the National Alliance on Mental Illness. Her son has schizophrenia and has spent the past 20 years being “failed, jailed, treated, and streeted” by what she called a broken public health system.

“We are doctors who have to watch these people die,” said psychiatrist Emily Wood, chair of the government affairs committee of the California State Association of Psychiatrists, a sponsor of the conservatorship bill, SB 43. “We have to talk to their families who know that they need that care, and we have to say we don’t have any legal basis to bring them into the hospital right now.”

Under current California law, a person can be held in the hospital involuntarily if they are a danger to themselves or others or if they are unable to seek food, clothing, or shelter as a result of mental illness or alcoholism. Doctors want to add other substance use disorders to the criteria, as well as an inability to look out for one’s own safety and medical care. (The state law defines what is known as “mental health conservatorship,” which is separate from the probate conservatorship that Britney Spears was under.)

Wood, who practices in Los Angeles, gave two examples of people she and her colleagues have tried, but struggled, to care for under the current rules. One is a man who doesn’t take his diabetes medication because he’s not taking his schizophrenia medication and doesn’t understand the consequences of not managing either condition.

Wood explained that even if he repeatedly ends up in the emergency room with dangerously high blood sugar, no one can compel him to take either medication under current law, because poorly managing one’s health is not a trigger for conservatorship.

Another man Wood described has a developmental disability that went untreated in childhood. He developed an addiction to methamphetamine in his 20s. Wood said the man is now regularly found sleeping in a park and acting inappropriately in public. His family members have begged doctors to treat him, but they can’t, because substance use disorder is not a trigger for conservatorship.

To Wood, treating these people, even when they’re unable to consent, is the compassionate, moral thing to do.

“It’s essential that we respect all the rights of our patients, including the right to receive care from us,” she said.

But other advocates, including some of those working for Californians with mental illnesses, see the issue very differently.

Lawyers from the nonprofit Disability Rights California said the proposed expansion of conservatorship and the ongoing rollout of CARE Courts are misguided efforts, focused on depriving people of their liberty and privacy.

Instead, they said, the state should invest in better voluntary mental health services, which help maintain people’s dignity and civil rights. The group filed a petition in January to try to block the implementation of CARE Courts.

These advocates are particularly concerned that people of color, specifically Black residents, who are overrepresented in the homeless population and overdiagnosed with schizophrenia, will now be disproportionately targeted by more forceful measures.

“When people are told that they have to go to court to get what they should be getting voluntarily in the community, and then they get a care plan that subjugates them to services that still do not meet their cultural needs, that is not compassion,” said Keris Myrick, an advocate who has schizophrenia and has experienced homelessness.

More Housing: Another Badly Needed Prescription

Under current state law in Oregon, a person can be held for involuntary treatment if they are a danger to themselves or others or are at risk of serious physical harm because they cannot provide for their basic personal needs due to a mental illness.

Oregon, like California, does not include substance use disorders as grounds for commitment.

But its law is slightly broader than California’s, at least in one respect: Legislators amended it in 2015 to give doctors more leeway to step in if a person’s psychosis or other chronic mental illness is putting them at risk of a medical crisis.

Terry Schroeder, a civil commitment coordinator with the Oregon Health Authority, said that, before the change, a person would have to be nearly comatose or within a few days of death to meet the criteria for doctors to forcibly treat them for their own welfare.

The law now allows care providers to intervene earlier in an ongoing medical crisis.

In Oregon and California, the lack of adequate treatment options is frequently invoked in the ongoing debates over forced commitment and conservatorship.

“Expanding conservatorships doesn’t solve for those structural issues around the lack of housing and the lack of funding for treatment services,” said Michelle Doty Cabrera, executive director of the County Behavioral Health Directors Association of California.

Cabrera’s group also questions the premise that forced treatment works, and there is indeed little evidence that compulsory treatment for substance use disorder is effective, and some evidence that it could even be harmful.

Critics of involuntary commitment have questioned the California Legislature’s objectives. If the ultimate goal of forced treatment is to reduce homelessness — and ease the moral failing of ill people sleeping on the street or using drugs in the open — then lawmakers are writing the wrong prescription, they said.

“The problem of homelessness is that people don’t have housing,” said primary care physician Margot Kushel, director of the University of California-San Francisco’s Benioff Homelessness and Housing Initiative.

“If you had all the treatment in the world and you didn’t have the housing, we would still have this problem.”

Supporters of involuntary commitments say both are needed. Many of the California lawmakers backing expanded conservatorship and CARE Courts are also backing efforts to increase the housing supply, including a $3 billion bond measure for the construction of small, neighborhood-oriented residences for people with mental illness.

Nationwide, rents have risen more quickly than people’s incomes in the past 20 years, particularly impacting people who rely on a fixed income, such as monthly disability payments.

This article is part of a partnership that includes KQED, OPB, and KFF Health News.

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In the past few years, 10,000 to 20,000 apps have stampeded into the mental health space, offering to “disrupt” traditional therapy. With the frenzy around AI innovations like ChatGPT, the claim that chatbots can provide mental health care is on the horizon.

The numbers explain why: Pandemic stresses led to millions more Americans seeking treatment. At the same time, there has long been a shortage of mental health professionals in the United States; more than half of all counties lack psychiatrists. Given the Affordable Care Act’s mandate that insurers offer parity between mental and physical health coverage, there is a gaping chasm between demand and supply.

For entrepreneurs, that presents a market bonanza. At the South by Southwest conference in March, where health startups displayed their products, there was a near-religious conviction that AI could rebuild health care, offering apps and machines that could diagnose and treat all kinds of illnesses, replacing doctors and nurses.

Unfortunately, in the mental health space, evidence of effectiveness is lacking. Few of the many apps on the market have independent outcomes research showing they help; most haven’t been scrutinized at all by the FDA. Though marketed to treat conditions such as anxiety, attention-deficit/hyperactivity disorder, and depression, or to predict suicidal tendencies, many warn users (in small print) that they are “not intended to be medical, behavioral health or other healthcare service” or “not an FDA cleared product.”

There are good reasons to be cautious in the face of this marketing juggernaut.

Decades ago, Joseph Weizenbaum, a professor at the Massachusetts Institute of Technology and considered one of the fathers of artificial intelligence, predicted AI would never make a good therapist, though it could be made to sound like one. In fact, his original AI program, created in the 1960s, was a psychotherapist named ELIZA, which used word and pattern recognition combined with natural language programming to sound like a therapist:

Woman: Well, my boyfriend made me come here.ELIZA: Your boyfriend made you come here?Woman: He says I’m depressed much of the time.ELIZA: I am sorry to hear that you are depressed.Woman: It’s true. I am unhappy.ELIZA: Do you think coming here will help you not to be unhappy?

Though hailed as an AI triumph, ELIZA’s “success” terrified Weizenbaum, whom I once interviewed. He said students would interact with the machine as if Eliza were an actual therapist, when what he’d created was “a party trick,” he said.

He foresaw the evolution of far more sophisticated programs like ChatGPT. But “the experiences a computer might gain under such circumstances are not human experiences,” he told me. “The computer will not, for example, experience loneliness in any sense that we understand it.”

The same goes for anxiety or ecstasy, emotions so neurologically complex that scientists have not been able pinpoint their neural origins. Can a chatbot achieve transference, the empathic flow between patient and doctor that is central to many types of therapy?

“The core tenet of medicine is that it’s a relationship between human and human — and AI can’t love,” said Bon Ku, director of the Health Design Lab at Thomas Jefferson University and a pioneer in medical innovation. “I have a human therapist, and that will never be replaced by AI.”

Ku said he’d like to see AI used instead to reduce practitioners’ tasks like record-keeping and data entry to “free up more time for humans to connect.”

While some mental health apps may ultimately prove worthy, there is evidence that some can do harm. One researcher noted that some users faulted these apps for their “scripted nature and lack of adaptability beyond textbook cases of mild anxiety and depression.”

It may prove tempting for insurers to offer up apps and chatbots to meet the mental health parity requirement. After all, that would be a cheap and simple solution, compared with the difficulty of offering a panel of human therapists, especially since many take no insurance because they consider insurers’ payments too low.

Perhaps seeing the flood of AI hitting the market, the Department of Labor announced last year it was ramping up efforts to ensure better insurer compliance with the mental health parity requirement.

The FDA likewise said late last year it “intends to exercise enforcement discretion” over a range of mental health apps, which it will vet as medical devices. So far, not one has been approved. And only a very few have gotten the agency’s breakthrough device designation, which fast-tracks reviews and studies on devices that show potential.

These apps mostly offer what therapists call structured therapy — in which patients have specific problems and the app can respond with a workbook-like approach. For example, Woebot combines exercises for mindfulness and self-care (with answers written by teams of therapists) for postpartum depression. Wysa, another app that has received a breakthrough device designation, delivers cognitive behavioral therapy for anxiety, depression, and chronic pain.

But gathering reliable scientific data about how well app-based treatments function will take time. “The problem is that there is very little evidence now for the agency to reach any conclusions,” said Kedar Mate, head of the Boston-based Institute for Healthcare Improvement.

Until we have that research, we don’t know whether app-based mental health care does better than Weizenbaum’s ELIZA. AI may certainly improve as the years go by, but at this point, for insurers to claim that providing access to an app is anything close to meeting the mental health parity requirement is woefully premature.

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Research has long shown that Black people live sicker lives and die younger than white people.

Now a new study, published Tuesday in JAMA, casts the nation’s racial inequities in stark relief, finding that the higher mortality rate among Black Americans resulted in 1.63 million excess deaths relative to white Americans over more than two decades.

Because so many Black people die young — with many years of life ahead of them — their higher mortality rate from 1999 to 2020 resulted in a cumulative loss of more than 80 million years of life compared with the white population, the study showed.

Although the nation made progress in closing the gap between white and Black mortality rates from 1999 to 2011, that advance stalled from 2011 to 2019. In 2020, the enormous number of deaths from covid-19 — which hit Black Americans particularly hard — erased two decades of progress.

Authors of the study describe it as a call to action to improve the health of Black Americans, whose early deaths are fueled by higher rates of heart disease, cancer, and infant mortality.

“The study is hugely important for about 1.63 million reasons,” said Herman Taylor, an author of the study and director of the cardiovascular research institute at the Morehouse School of Medicine.

“Real lives are being lost. Real families are missing parents and grandparents,” Taylor said. “Babies and their mothers are dying. We have been screaming this message for decades.”

High mortality rates among Black people have less to do with genetics than with the country’s long history of discrimination, which has undermined educational, housing, and job opportunities for generations of Black people, said Clyde Yancy, an author of the study and chief of cardiology at Northwestern University’s Feinberg School of Medicine.

Black neighborhoods that were redlined in the 1930s — designated too “high risk” for mortgages and other investments — remain poorer and sicker today, Yancy said. Formerly redlined ZIP codes also had higher rates of covid infection and death. “It’s very clear that we have an uneven distribution of health,” Yancy said. “We’re talking about the freedom to be healthy.”

A companion study estimates that racial and ethnic inequities cost the U.S. at least $421 billion in 2018, based on medical expenses, lost productivity, and premature death.

In 2021, non-Hispanic white Americans had a life expectancy at birth of 76 years, while non-Hispanic Black Americans could expect to live only to 71. Much of that disparity is explained by the fact that non-Hispanic Black newborns are 2½ times as likely to die before their 1st birthdays as non-Hispanic whites. Non-Hispanic Black mothers are more than 3 times as likely as non-Hispanic white mothers to die from a pregnancy-related complication. (Hispanic people can be of any race or combination of races.)

Racial disparities in health are so entrenched that even education and wealth don’t fully erase them, said Tonia Branche, a neonatal-perinatal medicine fellow at Lurie Children’s Hospital of Chicago who was not involved in the JAMA study.

Black women with a college degree are more likely to die from pregnancy complications than white women without a high school diploma. Although researchers can’t fully explain this disparity, Branche said it’s possible that stress, including from systemic racism, takes a greater toll on the health of Black mothers than previously recognized.

Death creates ripples of grief throughout communities. Research has found that every death leaves an average of nine people in mourning.

Black people shoulder a great burden of grief, which can undermine their mental and physical health, said Khaliah Johnson, chief of pediatric palliative care at Children’s Healthcare of Atlanta. Given the high mortality rates throughout the life span, Black people are more likely than white people to be grieving the death of a close family member at any point in their lives.

“We as Black people all have some legacy of unjust, unwarranted loss and death that compounds with each new loss,” said Johnson, who was not involved with the new study. “It affects not only how we move through the world, but how we live in relationship with others and how we endure future losses.”

Johnson’s parents lost two sons — one who died a few days after birth and another who died as a toddler. In an essay published last year, Johnson recalled, “My parents asked themselves on numerous occasions, ‘Would the outcomes for our sons have been different, might they have received different care and lived, had they not been Black?’”

Johnson said she hopes the new study gives people greater understanding of all that’s lost when Black people die prematurely. “When we lose these lives young, when we lose that potential, that has an impact on all of society,” she said.

And in the Black community, “our pain is real and deep and profound, and it deserves attention and validation,” Johnson said. “It often feels like people just pass it over, telling you to stop complaining. But the expectation can’t be that we just endure these things and bounce back.”

Teleah Scott-Moore said she struggles with the death of her 16-year-old son, Timothy, an athlete who hoped to attend Boston College and study sports medicine. He died of sudden cardiac arrest in 2011, a rare condition that kills about 100 young athletes a year. Research shows that an underlying heart condition that can lead to sudden cardiac death, hypertrophic cardiomyopathy, often goes unrecognized in Black patients.

Scott-Moore still wonders if she should have recognized warning signs. She also has blamed herself for failing to protect her two younger sons, who found Timothy’s body after he collapsed.

At times, Scott-Moore said, she wanted to give up.

Instead, she said, the family created a foundation to promote education and health screenings to prevent such deaths. She hears from families all over the world, and supporting them has helped heal her pain.

“My grief comes back in waves, it comes back when I least expect it,” said Scott-Moore, of Baltimore County, Maryland. “Life goes on, but it’s a pain that never goes away.”

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HHS OCR Settles HIPAA Investigation with Arkansas MedEvolve Following Unlawful Disclosure of Protected Health Information on an Unsecured Server for $350,000

HHS Secretary Xavier Becerra attended the Health Ministers’ Meeting in Nagasaki, Japan, to discuss global health priorities.

Over the past two years, rural Greene County in northeastern Tennessee has collected more than $2.7 million from regional and national settlements with opioid manufacturers and distributors. But instead of helping people harmed by addiction, county officials are finding other ways to spend it.

They have put $2.4 million toward paying off the county’s debt and have directed another $1 million arriving over more than a decade into a capital projects fund. In March, they appropriated $50,000 from that fund to buy a “litter crew vehicle” — a pickup truck to drive inmates to collect trash along county roads.

“It’s astounding,” said Nancy Schneck, a retired nurse who has seen addiction infiltrate the community, where employers avoid drug testing for fear of losing too many employees and mental health crises and homelessness are rampant. She wants to see the money go toward mental health and addiction treatment. Why can’t county leaders “see treating some people and maybe getting them out of this cycle might be advantageous?” she said.

In 2021, the latest year for which comparable data is available, Greene County’s rate of drug overdose deaths topped state and national figures.

But Mayor Kevin Morrison said the county has borne the costs of the opioid epidemic for years: It has funded a beleaguered sheriff’s office, improved the jail — which is packed with people who’ve committed addiction-related crimes — and supported a drug court to divert some people to treatment. It has also suffered indirect costs of the crisis: people dropping out of the workforce due to addiction, schools and welfare services caring for more children who’ve experienced trauma, and some taxpayers leaving the county altogether. Addiction is not the sole reason for Greene County’s economic woes, but it has contributed to more than $30 million of debt.

“We’ve been dealing with this crisis for quite some time, but nobody wants to pay the bill as it comes,” Morrison said. “So when these funds are made available, then we are paying bills that have been due for quite some time.”

The debate in this Appalachian county is reverberating nationwide as state and local governments receive billions of dollars from companies that made, distributed, or sold opioid painkillers, like Johnson & Johnson, Cardinal Health, and CVS. The companies were accused of fueling the overdose epidemic, and the money is meant to remediate that harm. About $3 billion has already landed in state, county, and city coffers, and about $50 billion more is expected in the coming decade and beyond.

States are required to spend at least 85% of the money on opioid-related programs, but KFF Health News’ ongoing investigation into how the cash is used — and misused — shows there is wide interpretation of that standard and little oversight.

That restriction didn’t apply to the money Greene County moved to its capital projects fund.

In many rural communities, which have been struggling to pay addiction-related costs for decades, local officials justify using the settlement funds to reimburse past expenses. Most of Tennessee’s 95 counties are in significant debt, which can present difficult choices about how to use this money, said Robert Pack, co-director of East Tennessee State University’s Addiction Science Center.

Still, he and many advocates hope the settlement funds are spent on tackling the current crisis. After all, more than 200 people nationwide are dying of overdoses each day. Investing in treatment and prevention can save lives and protect future generations, they say.

“There is no good excuse to sit on the funds or put them into a general fund,” said Tricia Christensen, policy director for the nonprofit Community Education Group. The organization is tracking settlement spending across Appalachia, which Christensen called the epidemic’s ground zero. “These dollars should be used to support people who have been most impacted by the overdose crisis.”

Nationally, there has been little oversight of the settlement dollars. President Joe Biden’s administration pledged to ensure the funds went toward tackling the addiction crisis, but has taken little action. Accountability at the state level varies.

In Tennessee, 15% of the state’s opioid settlement funds are controlled by the legislature and another 15% by local governments. Those two buckets have few restrictions.

The other 70% is controlled by an Opioid Abatement Council, which has more rigorous standards. When the council, which must give 35% of its funds to local governments, recently distributed more than $31 million to counties, it required the funds be spent on a list of approved interventions, such as building recovery housing and increasing addiction treatment for uninsured people.

“I can guarantee we’re going to bird-dog” those funds, said Stephen Loyd, chair of the council and a physician in recovery from opioid addiction. If counties use them for unapproved purposes, the counties will not receive future payouts, he said.

Greene County’s reimbursement of its capital projects fund comes from its own pot — the 15% that is controlled entirely by local governments.

In such cases, the public can hold officials accountable, Loyd said. “If you don’t like the way the money is being spent, you have the ability to vote.”

Local leaders are generally not being “nefarious” with these decisions, he said. They make hundreds of budgetary choices a month and simply don’t have experience with addiction or health policy to guide them in using the money.

Loyd and other local experts are trying to fill that gap. He meets with county officials and recommends they speak with their local anti-drug coalitions or hold listening sessions to hear from community members. Pack, from East Tennessee State, urges them to increase access to medications that have proven effective in treating opioid addiction.

Both men point counties to an online recovery ecosystem index, where leaders can see how their area’s resources for recovery compare with those of others.

In Greene County, for example, the index indicates there are no recovery residences and the number of treatment facilities and mental health providers per 100,000 residents is below state and national averages.

“That’s a great place to get started,” Loyd said.

Some Greene County residents want to see opioid settlement funds go to local initiatives that are already operating on the ground. The Greene County Anti-Drug Coalition, for instance, hosts presentations to educate young people and their parents on the risks of drug use. They meet with convenience store owners to reinforce the importance of not selling alcohol, cigarettes, or vaping devices to minors. In the future, the coalition hopes to offer classes on life skills, such as how to budget and make decisions under pressure.

“If we can do prevention work with kids, we can change the trajectory of their lives as adults,” said Wendy Peay, secretary of the anti-drug coalition and executive director of United Way of Greene County.

The coalition has asked the county for settlement funds but has not received any yet.

Nearby in Carter County, a new residential treatment facility is taking shape at the site of a former prison. At least seven counties, cities, and towns in the region have committed a combined $10 million in opioid settlement funds to support it, said Stacy Street, a criminal court judge who came up with the idea. Greene County is among the few local governments that did not contribute.

It will be part of the region’s drug recovery court system, in which people with addiction who have committed crimes are diverted to intensive treatment instead of prison.

Currently there are no long-term residential facilities in the area for such patients, Street said. Too often, people in his court receive treatment during the day but return home at night to “the same sandbox, playing with the same sand-mates,” increasing their risk of relapse.

Street said the new facility will not offer medications to treat opioid addiction — the gold standard of medical care — because of security concerns. But some patients may be taken to receive them off campus.

Morrison, the Greene County mayor, said he worried about contributing to the facility because it is a recurring cost and the settlement funds will stop flowing in 2038.

“There’s been great pressure put on local entities like Greene County to try to solve this problem with this limited amount of funding,” he said, when “the federal government, which has the ability to print money to solve these problems, is not in this business.”

The county is still deciding how to spend nearly $334,000 of settlement funds it recently received from the state’s Opioid Abatement Council. Morrison said they’re considering using it for the anti-drug coalition’s education efforts and the county drug court. Given the guidelines from the abatement council, these funds can’t be used to pay old debts.

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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Years ago, a top chemical biologist pondered ditching his cancer research to take a more lucrative commission growing healthier apples. Michael Milken stopped him.

“I told him we could probably eat the same apples for the next 20 years and be OK, but we wouldn’t be OK if he didn’t continue his potential groundbreaking work,” Milken, 76, said. “Then we funded him.”

Driven by a family history of disease and his own experience with prostate cancer, Milken, the onetime junk-bond wizard whose spectacular downfall on securities charges led to a 22-month prison term in the 1990s, has spent the last three decades trying to advance medical science so that people “can find cures to life-threatening diseases within their own lifetimes.”

In “Faster Cures,” a book that is part memoir and part medical history, the financier-turned-philanthropist argues for applying business principles to foster quicker medical breakthroughs: more collaboration and information-sharing among researchers, a more streamlined path through government regulations, and more public and private funding to keep the best and brightest working in the field. The book was written with Geoffrey Evans Moore, a longtime associate of Milken’s.

Milken, whose net worth is estimated at $6 billion, has donated $1.2 billion to medical research and public health causes and raised another $1 billion for them from donors, according to a spokesperson. Much of that money is distributed through the Santa Monica-based Milken Institute, which funds organizations around the world that support research and education.

This interview has been edited for length and clarity.

Q: Was it difficult to write about your father’s death from cancer and your own diagnosis of advanced prostate cancer in 1993, which was thought at the time to be terminal?

Life-threatening diseases are not separated by wealth or anything else. One in 2 men are going to get diagnosed with cancer in their lifetime; for women, it’s 1 in 3. In the hospital room or in surgery, we’re all equal. That’s why I wanted to personalize it because my family is no different. In the 1970s, science could not move fast enough to save my father’s life.

Q: Is the U.S. too slow in reaching cures?

A train today in Europe or Asia can travel at 200 miles an hour, but the average train in the U.S. travels at the same speed as 100 years ago because you can’t put faster trains on tracks that aren’t more modern. Science is this train that’s moving fast, but the tracks are 20th-century tracks. As science moves quickly — sequencing your genome and your microbiome, for example — many of the ways we deal with our health system still relate to what it was in the 1900s, not in this century.

Q: What are those outdated practices?

One is collaboration. Thirty years ago, after my diagnosis, I attended a prostate cancer conference at MD Anderson Cancer Center in Houston, and I noticed that no one from Memorial Sloan Kettering [in New York City] was presenting, and they were the other recognized top experts in the field. When I asked why, I was told by MD Anderson’s people that they felt Sloan Kettering was a competitor. I said, “They’re not a competitor to patients.” We’ve done a huge amount of work in that area to get researchers and scientists sharing information and working together.

Q: Are cancer patients getting into clinical trials at earlier stages?

Yes, but there’s another element here relating to health equity. The demographics of America have changed considerably. Sixty years ago, 75% of everyone living in the U.S. who was not born here came from Europe. Today, more than 70% of everybody living here who wasn’t born here came from Latin America or Asia, but our clinical trials are still largely Caucasian. We’re not including people who will someday make up the majority of people in this country.

Q: You also spend a lot of time writing about prevention, especially as it pertains to diet. Why?

If you went to medical school in China 30 or 40 years ago, you wouldn’t have even studied diabetes because it was so rare there. Today, because of changes in the food chain and what they’re eating — meat-based and fat-based diets — China has the most people with diabetes of any country in the world. That’s what thousands of McDonald’s and KFC and other franchises will do. We also know that eating certain foods can slow the growth of certain kinds of cancers, or that changing your diet can accelerate the growth. The CEO of one of the largest medical research companies in the world told me, “The next great drug is going to be prevention.”

Q: But isn’t the medical industry oriented toward selling treatment and not prevention?

When we proposed the idea to the medical community in the ’90s that you are what you eat, they said, “Prove it.” And we didn’t sequence the genome until 2003, so prior to that the evidence was mostly anecdotal, but there was plenty of it. The notion is mainstream today, but teaching doctors that nutrition makes a difference is still a minor, minor part of medical school. It should be at the forefront. We often refer to the produce section of the grocery store as the pharmacy of the 21st century.

Q: Your financial theories revolved around finding lower-graded bonds that produced great returns — essentially, identifying an undervalued segment of the market. Is there an undervalued equivalent in medicine or science?

It’s about the democratization of capital. In medicine and science, access to financial capital serves as a multiplier effect, but the largest asset is human capital. I’ve spent considerable time trying to identify the future Ted Turners or [telecommunications giant] John Malones of the world of medicine, then convincing them to go into research and funding them.

Q: How do you provide financing to the most talented people in the field?

That includes private and public funding. In 1998, we organized a march on Washington, and a few months later President Clinton signed into law a massive increase in the NIH [National Institutes of Health] budget. Since then, there’s been an incremental half a trillion dollars invested into the NIH, and that has made all the difference for so many organizations working on specific diseases or types of cancer.

Q: Why do you fund medical research?

My interest in medicine and science started when I was 8 years old. It accelerated in the ’70s when my wife’s mother was diagnosed with breast cancer and my father’s melanoma returned. That began a search for medical solutions that I brought into my existing philanthropy in 1982. Who a person is and what they believe in — there has always been a lot of misinformation out there, and it’s only going to get worse with artificial intelligence chat. It’s not just related to me. But I think the thousands of companies that we financed, and the millions of jobs created, are evidence that the ideas I put forth are today in the mainstream. All of the facts are there for one to see.

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

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

USE OUR CONTENT

This story can be republished for free (details).

HHS Secretary Becerra released statement after President Joe Biden announced his intent to nominate Dr. Bertagnolli to be the 17th Director of NIH