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She Once Advised the President on Aging Issues. Now, She’s Battling Serious Disability and Depression.
Tue, 28 Nov 2023 13:50:03 +0000

If you or someone you know is in crisis, please call the National Suicide Prevention Lifeline at 988 or contact the Crisis Text Line by texting HOME to 741741.

The GoFundMe request jumped out at me as I was scrolling through posts on LinkedIn.

Nora Super, executive director of the 2015 White House Conference on Aging and former director of the Milken Institute’s Center for the Future of Aging, was seeking contributions after suffering a severe spinal cord injury.

“Right now, I have no feeling below the waist. I need lots of equipment to go home from the hospital and live safely and independently,” she wrote in her appeal.

Since coping with disability — and the cost of coping with disability — is an enormously important issue for older adults, I wondered if Super would discuss her experiences and try to put them in perspective.

The Institute on Disability at the University of New Hampshire ran the numbers for me: About 19 million people 65 and older in the U.S. — a third of that age group — had some type of disability in 2021, the latest year for which data is available. This includes difficulty with hearing, vision, cognition, mobility, or activities such as bathing, dressing, or shopping.

Super agreed to talk to me, but her story was more complicated than I anticipated.

First, some context. Super, 59, has been open about her struggle with major depression, an issue she’s written about. In mid-June, after being fired from the Milken Institute, she began slipping into another depression — her fifth episode since 2005.

Super’s psychiatric medications weren’t working, she said, and she sought electroconvulsive therapy (ECT), which had been effective for her in the past. But mental health services are difficult to get in a timely way, and Super couldn’t get an ECT appointment until Aug. 7.

On July 30, convinced that her life had no value, she attempted to end it. This was the event that led to her injury.

After two weeks in intensive care and a recovery unit, Super was ready to leave the hospital. But no rehabilitation facility would take her because of her mental health crisis. Without psychiatrists on staff, they claimed they couldn’t ensure her safety, said Len Nichols, her husband.

Nichols, 70, has held several high-level health policy positions during his career, among them senior adviser for health policy at the Office of Management and Budget during the Clinton administration and director of the Center for Health Policy Research and Ethics at George Mason University. 

Using every contact he could, Nichols searched for a facility in New Orleans where Super could get intensive rehab services. During the pandemic, the couple had moved there from their longtime home in Arlington, Virginia. New Orleans is where Super grew up and three of her sisters live.

It took six days to get Super admitted to rehab. And that was just one of the challenges Nichols faced.

Over the next month, he prepared for Super’s return home, at considerable expense. An elevator was installed in the couple’s three-story home (their bedroom is on the second floor) for $38,000. A metal ramp at the home’s entry cost $4,000. A lift for their Jeep cost $6,500. A bathroom renovation came to $4,000. An electronic wheelchair-style device that can be used in the shower was another $4,000.

Super’s privately purchased insurance policy covered a wheelchair, bedside commode, hospital bed, and a Hoyer lift (a device that helps people transfer in and out of bed) with a small monthly copayment.

“It’s been surprising how much stuff I’ve needed and how much all of it costs,” Super admitted when we spoke on the phone.

“Even with all our education, resources, and connections, we have had a hard time making all the arrangements we’ve needed to make,” Nichols said. “I cannot imagine how people do this with none of those three things.”

He showered praise on the physical and occupational therapists who worked with Super at the rehab facility and taught him essential skills, such as how to move her from bed to her wheelchair without straining his back or damaging her skin.

“I don’t think I ever appreciated how essential their work is before this,” he told me. “They explain what you’ll be able to do for yourself and then they help you do it. They show you a pathway back to dignity and independence.”

Still, the transition home has been difficult. “In the hospital, nothing was expected of me, everything was done for me. In rehab, you’re very goal-oriented and there are still people to take care of you,” Super told me. “Then, you come home, and that structure is gone and things are harder than you thought.”

Fortunately, Nichols is healthy and able to handle hands-on caregiving. But he soon needed a break and the couple hired home-care workers for four hours a day, five days a week. That costs $120 daily, and Super’s long-term care insurance pays $100.

They’re lucky they can afford it. Medicare typically doesn’t pay for chronic help of this kind, and only about 7% of people 50 or older have long-term care insurance.

What does Super’s future look like? She isn’t sure. Physicians have said it could take a year to know whether she can recover function below her waist.

“I’m happy to be alive and to see how I can take where I’ve ended up and do something positive with it,” she said. “I still have a voice, and I can help people understand what it is to live with physical limitations in a way that I’ve never really understood before.”

Hopefully, this sense of purpose will sustain her. But it won’t be easy. After we spoke, Super became discouraged with her prospects for recovery and her mood turned dark again, her husband said.

“Knowing her, I believe that she will make it her mission to help others better understand the enormous and multiple challenges associated with the onset of a disability, and she will press for changes in our health system to improve the lives of families who have to deal with disabilities,” said Stuart Butler, a senior fellow at the Brookings Institution who has worked with Super in the past.

Persistent accessibility problems for people with disabilities are part of what Super wants to speak out about. “I live in an old city with sidewalks that are very uneven, and just getting down the street in my chair is a big hassle,” she said. “Finding parking where we can open the door fully and get me out is a challenge.” 

Nichols has been surprised by how many medical offices have no way of lifting Super from her wheelchair to the exam table. “The default is, they ask me, ‘Can you pick her up?’ It’s stunning how poorly prepared they are to help someone like Nora.”

Then, there are reactions Super encounters when she leaves the house. “Going down the street, people look at me and then they look away. It definitely feels different than when I was able-bodied. It makes me feel diminished,” Super said.

Nichols finds himself thinking back to something a neurosurgeon said on the day Super was injured and had her first operation. “He told me, ‘Look, there’s more damage than we thought, and she won’t be what she was. You’re not going to know for six to 12 months what’s possible. But I can tell you to do as much as you can as soon as you can to move on to a new normal. Millions of people have done it, and you can too.’”

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 to submit your requests or tips.

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La atención de salud, en el centro del debate entre DeSantis y Newsom
Mon, 27 Nov 2023 20:33:01 +0000


Gobernador Ron DeSantisEdad: 45Población de Florida: 22.2 million


Gobernador Gavin NewsomEdad: 56Población de California: 39 million

El candidato presidencial republicano Ron DeSantis y el gobernador demócrata Gavin Newsom —rivales políticos y representantes de la América roja y azul— se enfrentarán en un debate sin precedentes el 30 de noviembre en Georgia.

Newsom, un agitador liberal en su segundo mandato como gobernador de California, no se presenta a las elecciones presidenciales de 2024. Pero incitó a DeSantis, en su segundo mandato como gobernador de Florida, a un cara a cara. “Yo llevaré mi gomina. Tú trae tu laca”, bromeó en las redes sociales.

El enfrentamiento promete ser una acalorada pelea entre estrellas políticas en ascenso que lideran dos de los estados más poblados y diversos del país. Y será la primera vez que los políticos se vean las caras, a pesar de que en las últimas semanas han intercambiado insultos en videos para recaudar fondos y anuncios de campaña.

Los temas principales serán la falta de vivienda y la salud, prioridades de los votantes y cuestiones que han definido, en gran medida, las políticas y los estilos de liderazgo de los gobernadores. Desde el aborto hasta las vacunas contra covid-19, Newsom y DeSantis no podrían ser más opuestos.

A principios de este año, DeSantis criticó a California por ser demasiado generosa con los programas públicos como Medicaid, que el Estado Dorado ha ampliado a todos los residentes elegibles, independientemente de su estatus migratorio. Esa política de gran alcance entra en vigencia en enero y va mucho más allá de la expansión opcional de Medicaid que la Ley de Cuidado de Salud a Bajo Precio (ACA) ofreció a los estados. En Florida, uno de los 10 estados que se ha negado a ampliar Medicaid bajo ACA o Obamacare, DeSantis alardea de la tasa de residentes del estado sin seguro de salud, que es del 11%, como si fuera una medalla de honor.

“No vamos a ser como California y tener un número masivo de personas en programas gubernamentales sin requisitos de trabajo”, dijo DeSantis en un debate de primarias presidenciales en el sur de California a principios de este año.

DeSantis ha llevado a su estado a restringir el aborto y la atención médica de afirmación de género, y a prohibir las máscaras relacionadas con covid y los mandatos de vacunación.

Newsom, un hábil e impetuoso sustituto del presidente demócrata Joe Biden, ha arremetido contra DeSantis por poner a los floridanos en peligro y despojarlos de sus derechos.

“Únete a nosotros en California, donde todavía creemos en la libertad”, expresó Newsom en un anuncio político a principios de este año.

Newsom se ha ganado el apodo de “gobernador de la atención de salud” al catapultar este asunto a lo más alto de sus prioridades políticas. Ha hecho de California un santuario del aborto y está ampliando drásticamente las prestaciones de salud. Durante su primera campaña, prometió estabecer el sistema de salud de pagador único al estado más poblado del país, pero esa idea encontró una dura oposición política al principio de su mandato. Y ahora Newsom se jacta de haber conseguido que la tasa de personas sin seguro en el estado haya alcanzado un mínimo histórico del 6,5% al ampliar la cobertura de otras maneras.

Se espera que estas cuestiones sean el centro del debate de 90 minutos televisado a todo el país por Fox News. Un debate que podría tener importantes repercusiones en la contienda presidencial del próximo año, e incluso ayudar a conformar el grupo de aspirantes a la Casa Blanca en 2028.

Con miras al debate, KFF Health News analizó 10 de las principales posiciones de los gobernadores en materia de salud y cómo sus políticas han mejorado —o perjudicado— la salud de los residentes a los que representan.



DeSantis se ha negado a ampliar la elegibilidad de Medicaid a más personas bajo la Ley de Cuidado de Salud a Bajo Precio (ACA). Una de las consecuencias es que, hacia febrero, más de 3 millones de floridanos tenían cobertura a través del mercado de seguros federal del Obamacare, más que cualquier otro estado. Florida no cuenta con un mercado estatal, ni ofrece subsidios patrocinados por el estado.


El estado ha adoptado con entusiasmo la Ley de Cuidado de Salud a Bajo Precio (ACA), ampliando Medicaid y creando su propio mercado de seguros, Covered California. Con Newsom, se ha ido mucho más allá de las disposiciones del Obamacare y se ha creado un requisito estatal que obliga a los californianos a tener un seguro de salud, después de que se eliminara el mandato federal.



DeSantis aprobó en abril una ley que prohíbe los abortos después de las seis semanas de embarazo. Sin embargo, la Corte Suprema de Florida ha tomado un recurso de apelación sobre la prohibición de las 15 semanas introducida en 2022, lo que determinará si la prohibición de las seis semanas puede entrar en vigencia.


Newsom encabezó en 2022 la iniciativa de enmendar la constitución estatal para consagrar el derecho al aborto y al control de la natalidad. También aprobó $60 millones para ayudar a pacientes sin seguro y a personas de fuera del estado a pagar abortos en California, y firmó leyes de atención a la salud reproductiva, incluida una que protege a los médicos que envían píldoras abortivas por correo a otros estados.

Atención transgénero


Bajo DeSantis, Florida aprobó este año una ley que prohíbe la atención médica de afirmación de género para menores trans y obliga a los pacientes adultos a firmar formularios de consentimiento informado antes de iniciar o continuar un tratamiento hormonal. La ley también limita la capacidad de los médicos para ordenar la terapia hormonal y prohíbe el uso de la telesalud para nuevas recetas. Está previsto que a mediados de diciembre se celebre un juicio por una demanda federal contra esta ley.


Newsom y otros líderes estatales han modificado la ley estatal para garantizar que todos los adultos y niños de California tengan derecho a servicios de atención médica de afirmación de género. Y las compañías de seguros que operan en California deben incluir información sobre los proveedores de la red de servicios de afirmación de género para 2025. Las agencias de salud estatales diseñan “normas de calidad aplicables” para garantizar que los pacientes trans tengan acceso a una atención integral.



DeSantis no ha declarado que la falta de vivienda sea una prioridad. En un video grabado en las calles de San Francisco, y publicado en redes sociales en junio, utilizó el tema como un arma de campaña para criticar lo que llamó “políticas de izquierda” en California. Florida experimenta con el uso de fondos de Medicaid para hacer frente a la falta de vivienda, pero el programa es limitado. Casi 26,000 personas carecen de hogar en Florida, es decir, 12 de cada 10,000 residentes.


Newsom ha destinado más de $20,000 millones a la crisis de los sin techo, y miles de millones más a servicios sociales y de salud. Por ejemplo, algunos californianos sin hogar pueden obtener servicios sociales a través del programa estatal de Medicaid, como dinero para depósitos de alquileres, pagos para servicios públicos, y para el primer y último mes de alquiler. Newsom también lideró una nueva iniciativa estatal que podría obligar a algunas personas sin hogar a someterse a tratamientos de salud mental o de adicciones. En California hay más de 171,000 personas sin hogar, es decir, 44 de cada 10,000 residentes.

Salud mental


DeSantis ha reiterado su promesa de abogar por programas de tratamiento de salud mental como gobernador, aunque Florida todavía ocupa el puesto 43 a nivel nacional en el acceso a la atención de salud mental y tiene la cuarta tasa más alta de adultos con enfermedades mentales sin seguro, según el Miami Center for Mental Health and Recovery. Con DeSantis, Florida ha aumentado la financiación estatal para programas de salud mental en las escuelas y servicios de salud mental entre pares para personal de primeros auxilios, y ha canalizado fondos para la prevención del suicidio.


Newsom firmó en 2020 una de las leyes de paridad en salud mental más estrictas del país, que obliga a las compañías de seguros a cubrir los trastornos mentales y las adicciones de la misma forma que lo harían con las afecciones físicas. Financia una iniciativa de $4,700 millones para proporcionar tratamiento de salud mental en las escuelas. Newsom también lidera en 2024 la campaña a favor de una medida de bonos estatales de $6,400 millones para renovar y ampliar los programas comunitarios de salud mental, incluidas miles de nuevas camas para tratamientos.



La tasa de muertes por sobredosis de drogas en Florida fue de 37,5 por cada 100,000 personas en 2021. En agosto, DeSantis anunció un nuevo programa estatal para recuperarse de las adicciones, calificado como “el primero de su tipo” en Estados Unidos, que utiliza consejeros pares, tratamiento asistido con medicamentos y una red coordinada de servicios de apoyo. DeSantis también autorizó a los condados de Florida a adoptar programas de intercambio de agujas en 2019 para reducir la propagación de enfermedades por transmisión sanguínea y fomentar el tratamiento de adicciones.


La tasa de muertes por sobredosis de drogas en California fue de 26,6 por cada 100, 000 habitantes en 2021. Newsom ha enviado a la Patrulla de Carreteras del estado y a la Guardia Nacional a San Francisco para combatir el comercio de fentanilo al aire libre e impulsa programas de recuperación de adicciones en todo el estado. Pero el año pasado vetó una ley que habría permitido a Los Angeles, San Francisco y Oakland establecer sitios seguros para inyectarse.

Medicamentos recetados


Una propuesta de DeSantis, presentada a la FDA en 2020, incluye permitir la importación de medicamentos de Canadá. Una nueva ley estatal también establece límites de precios para los administradores de beneficios farmacéuticos —intermediarios entre aseguradoras, farmacias y fabricantes— y crea nuevas normas para ellos en torno a la transparencia de precios. La ley también obliga a las farmacéuticas a revelar aumentos de precios significativos.


Newsom encabeza una iniciativa de $100 millones, la primera en el país, que sitúa a California en el negocio de la fabricación de medicamentos genéricos, empezando por la insulina y la naloxona, un fármaco para revertir el efecto de los opioides. California ya contaba con una ley de transparencia de precios cuando Newsom asumió el cargo. Este año, firmó una ley que endurece la normativa estatal para los administradores de beneficios farmacéuticos.

Cuidado de salud asequible


En 2019, DeSantis firmó la Ley de Ahorro del Paciente, que permite a las aseguradoras de salud compartir los ahorros de costos con los afiliados que compran servicios de atención médica, como imágenes y pruebas de diagnóstico. Bajo su liderazgo, los legisladores de Florida también han permitido planes de salud a corto plazo, que duran menos de un año, y acuerdos de atención médica directa entre un paciente y un proveedor de salud que no se consideran seguros, y no están sujetos al código de seguros de Florida.


Una de las primeras iniciativas de Newsom en materia de salud consistió en financiar subvenciones estatales al seguro médico para residentes ingresos bajos y medios que contraten un seguro a través de Covered California. También acordó este año reducir los copagos y eliminar algunos deducibles de los planes vendidos a través del mercado. La recién creada Office of Health Care Affordability de California limita los aumentos de costos del sector y podría regular la consolidación de la industria de la salud. California prohíbe los planes de salud a corto plazo.

Salud Pública


DeSantis firmó una ley en 2021 que prohíbe al gobierno, las escuelas y los empleadores privados exigir la vacunación contra covid. En 2023, presionó a los legisladores para que aprobaran leyes que prohibieran ciertos requisitos de vacunas y uso de máscaras. También estableció un Comité de Integridad de Salud Pública dirigido por su cirujano general elegido a dedo, Joseph Ladapo, cuya orientación oficial sobre las vacunas de covid contradice las recomendaciones de los CDC. La tasa de vacunación de refuerzo contra covid-19 en el Estado del Sol para los residentes de 5 años en adelante es del 12,4%.


Newsom fue el primer gobernador de Estados Unidos en emitir una orden para permanecer en casa en todo el estado al comienzo de la pandemia de covid-19. Impulsó fuertes mandatos de vacunación y máscaras, y acusó a DeSantis de ser débil en materia de salud pública. Newsom también ha firmado leyes que refuerzan los mandatos de vacunación infantil, incluida una severa medida contra las falsas exenciones médicas concedidas por los doctores. La tasa de vacunación de refuerzo contra covid-19 en el Estado Dorado para los residentes de 5 años en adelante es del 21,9%.

Atención de salud del inmigrante


Al tener DeSantis la inmigración como una prioridad, los legisladores aprobaron una ley estatal que obliga a todos los hospitales de Florida a preguntar en sus formularios de admisión si un paciente es ciudadano estadounidense o se encuentra legalmente en el país. Médicos, enfermeras y expertos en políticas de salud afirman que la ley afecta a personas marginadas, que ya tienen dificultades para desenvolverse en el sistema de salud, y que los disuadirá aún más de buscar atención médica.


A partir de enero, todos los inmigrantes que cumplan los requisitos de ingresos podrán acogerse al programa estatal de Medicaid. Antes que Newsom asumiera el cargo, California ya había ampliado la elegibilidad a los niños inmigrantes indocumentados hasta los 18 años. Newsom firmó luego leyes que ampliaron el programa a adultos jóvenes hasta los 26 años, a adultos mayores de 50 años y, más tarde, a los inmigrantes de cualquier edad que cumplieran con los requisitos de elegibilidad.

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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How the Thyroid Gland Mystifies Doctors and Patients
Mon, 27 Nov 2023 17:30:03 +0000

November 27, 2023

Article HTML

About 25 years ago, Andy Miller learned he had hypothyroidism, a condition that afflicts millions of other Americans. Curious about how this condition was affecting others, the KFF Health News journalist interviewed endocrinologists who treat hypothyroidism and several patients who live with it. Their stories revealed how mystifying thyroid and autoimmune conditions can be.

This illustrated report has been adapted from a KFF Health News article, “Among Hurdles for Autoimmune Disease Patients: Diagnosis, Costs, Inattentive Care” by Andy Miller.

Illustrations by Oona Tempest.

Creative direction and editing by Hannah Norman, with additional editing by Sabriya Rice.

Copy editing by Terry Byrne.


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1 in 3 People Dropped by Utah Medicaid Left Uninsured, a ‘Concerning’ Sign for Nation
Wed, 22 Nov 2023 23:38:03 +0000

About 30% of Utah residents who were cut from Medicaid this year say they became uninsured, according to state officials who conducted a first-of-its-kind survey of people disenrolled from the program.

Utah has dropped more than 130,000 out of about 500,000 Medicaid beneficiaries since April, after the federal government lifted a pandemic-era requirement that states keep people enrolled in the insurance program for low-income people. Since then, every state has started what’s called an “unwinding” to reassess whether people in Medicaid are still eligible and drop those no longer qualified — including people who fail to respond to government inquiries.

Utah’s survey sheds light on the fate of the 11 million people cut from the program nationwide so far. While officials predicted some of them would wind up uninsured, little information is yet available about how many obtained coverage elsewhere. States have renewed Medicaid coverage for more than 20 million people, according to KFF’s unwinding tracker.

The Utah survey, said Arielle Kane, director of Medicaid initiatives at the advocacy group Families USA, “does, unfortunately, give us a window, in a bad way, as Utah is a state with very low unemployment — so in a state with higher unemployment it may be worse.”

On top of the pandemic throwing millions of Americans out of work and onto Medicaid rolls, in 2020 Utah began expanding its program under the Affordable Care Act, raising eligibility to cover more working people with low incomes. As a result, tens of thousands who enrolled three years ago had never been through the process of renewing their coverage.

Utah’s Medicaid director, Jennifer Strohecker, announced the results of the survey of disenrolled people on Nov. 14. “This is really challenging for us and concerning to us as we consider what this means on the population,” she said.

Advocates for expanded U.S. insurance coverage fear many people left uninsured by the unwinding are children, as they make up more than 40% of Medicaid enrollees.

The survey had 1,003 respondents and a margin of error of plus or minus 3%, said Kolbi Young, a spokesperson for the Medicaid agency. The agency declined to make the full survey results available, saying they’re still under review.

Nationwide, there are other signs that many people dropped from Medicaid are winding up uninsured. Epic Research, a division of the electronic medical records company, published a study Nov. 17 showing that uninsured emergency room visits increased substantially this summer, after the unwinding began.

The researchers examined ER records from nearly 1,300 hospitals. They found that the self-pay rate among patients increased from 6.1% in March to 8.5% in August — the highest rate observed since the first weeks of the pandemic.

Even before the pandemic, it was typical for many people who lost Medicaid coverage to go without insurance for a time, said Robin Rudowitz, a Medicaid policy researcher and vice president at KFF. “We do know from earlier research that following a disenrollment from Medicaid, two-thirds of people had a period of uninsurance over the course of the following year,” she said.

So Utah’s survey results — showing about a third of disenrolled people lack insurance — is “not outlandish, but it is very concerning,” said Emily Zheutlin, a health policy analyst with the Utah Health Policy Project and a member of the state’s Medicaid advisory board.

She said people in the state have had difficulty renewing their Medicaid coverage, with long wait times on calls to the state Medicaid agency. Many people also don’t know they need to reverify their eligibility, she said.

Without health coverage, people may delay seeking needed care or be left with unaffordable bills when they get it.

Rachel Craig, government affairs manager for the Association for Utah Community Health, which represents community health centers, had feared up to half of those disenrolled from Medicaid would be uninsured.

“This is better than expected, though it’s still a big number,” she said.

But she said the state’s survey could be skewed because people with insurance may be more likely to respond than people who are uninsured.

KFF Health News data journalist Hannah Recht contributed to this report.

Phil Galewitz:,

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Why Long-Term Care Insurance Falls Short for So Many 
Wed, 22 Nov 2023 16:31:04 +0000

For 35 years, Angela Jemmott and her five brothers paid premiums on a long-term care insurance policy for their 91-year-old mother. But the policy does not cover home health aides whose assistance allows her to stay in her Sacramento, California, bungalow, near the friends and neighbors she loves. Her family pays $4,000 a month for that. 

“We want her to stay in her house,” Jemmott said. “That’s what’s probably keeping her alive, because she’s in her element, not in a strange place.” 

The private insurance market has proved wildly inadequate in providing financial security for most of the millions of older Americans who might need home health aides, assisted living, or other types of assistance with daily living. 

For decades, the industry severely underestimated how many policyholders would use their coverage, how long they would live, and how much their care would cost. 

And as Jemmott belatedly discovered, the older generation of plans — those from the 1980s — often covered only nursing homes. 

Only 3% to 4% of Americans 50 and older pay for a long-term care policy, according to LIMRA, an insurance marketing and research association. That stands in stark contrast to federal estimates that 70% of people 65 and older will need critical services before they die. 

Repeated government efforts to create a functioning market for long-term care insurance — or to provide public alternatives — have never taken hold. Today, most insurers have stopped selling stand-alone long-term care policies: The ones that still exist are too expensive for most people. And they have become less affordable each year, with insurers raising premiums higher and higher. Many policyholders face painful choices to pay more, pare benefits, or drop coverage altogether. 

“It’s a giant bait-and-switch,” said Laura Lunceford, 69, of Sandy, Utah, whose annual premium with her husband leaped to more than $5,700 in 2019 from less than $3,800. Her stomach knots up a couple of months before the next premium is due, as she fears another spike. “They had a business model that just wasn’t sustainable from the get-go,” she said. “Why they didn’t know that is beyond me, but now we’re getting punished for their lack of foresight.”

“We want her to stay in her house,” Angela Jemmott says of her mother, Jewell Thomas. “That’s what’s probably keeping her alive, because she’s in her element, not in a strange place.”(Bryan Meltz for The New York Times)

The glaring gaps in access to coverage persist despite steady increases in overall payouts. Last year, insurers paid more than $13 billion to cover 345,000 long-term care claims, according to industry figures. Many policyholders and their relatives reported that their plans helped them avert financial catastrophes when they faced long-term care costs that would have otherwise eviscerated their savings. 

But others have been startled to learn that policies they paid into over decades will not fully cover the escalating present-day costs of home health aides, assisted living facilities, or nursing homes. And in other cases, people entitled to benefits confront lengthy response times to coverage requests or outright denials, according to records kept by the National Association of Insurance Commissioners, the organization of state regulators. 

Jesse Slome, executive director of the American Association for Long-Term Care Insurance, an industry trade group, said long-term care was the most challenging type of insurance to manage. “You need multiple crystal balls,” Slome said. “And you have to look 20 years into the future and be right.”

The Pandemic Paused a Long-Term Decline 

The industry’s wobbly finances haven’t steadied despite a brief profitable surge during the coronavirus pandemic. Earnings rose because thousands of people who were drawing benefits, many in nursing homes or assisted living facilities, died from covid-19, and other policyholders died before using their insurance. Others stopped tapping their benefits because they fled facilities and went to live with their families, who provided unpaid care. 

Overall, earnings went from $2.3 billion in losses in 2019 to two years of profits totaling $1.1 billion, before receding into the red in 2022 by losing $304 million, according to Fitch Ratings. 

Still, none of that was enough to reverse the industry’s long-term decline. Doug Baker, a director in Fitch’s U.S. life insurance group, said long-term care insurance “is one of the riskiest in our universe” because of the lingering financial burden from underestimating the number of people who would tap their policies. 

More insurers now offer hybrid plans that combine life insurance with long-term care. Those policies are less generous than the ones offered a decade ago — and using the long-term care benefit drains some or all of the money policyholders hoped to leave to their heirs. 

“I don’t think people will offer unlimited again,” said Tom McInerney, the chief executive of Genworth Financial, which suspended selling plans through brokers in 2019. “One way or another, taxpayers are going to have to pay more for long-term care needs of the baby boomers.” 

Many experts believe it’s untenable to expect that a private insurance market can protect most people from the growing burden of long-term care costs. 

“The whole situation is poorly suited to that kind of insurance offering,” said Robert Saldin, a political science professor at the University of Montana who studies the industry. 

Falling Profits and Skyrocketing Premiums

A photo of a woman sitting on a couch, posing for a portrait.Ann Kempski at her home in Maryland where her mother, Alice Kempski, moved in during the pandemic. Alice Kempski had paid premiums on a long-term care insurance policy for 16 years, but when the family tried to file a claim, they discovered that the company was insolvent.(Shuran Huang for The New York Times)

Starting in the 1970s, long-term care insurance was touted as a way to keep older people from eroding their retirement savings or resorting to Medicaid, the state-federal program for the poor and disabled. Early plans were limited to nursing home care but later expanded to cover in-home care and assisted living centers. Sales of the policies doubled from 1990 to 2002.

As demand grew, however, there were signs the industry had vastly miscalculated the cost of its products. Insurers set early policy prices competitively low, based on actuarial models that turned out to be markedly inaccurate. Forecasters’ estimates of policyholders’ longevity were wrong. U.S. life expectancy increased to nearly 77 years in 2000 from about 68 years in 1950, federal records show. And as people lived longer, their need for care increased. 

Industry officials also failed to account for the behavior of savvy consumers determined to keep their long-term care coverage. Insurers counted on policy lapse rates — people giving up their policies or defaulting on payments — of about 4% annually. The actual lapse rate was closer to 1%. 

As the miscalculations sent profits plummeting, insurers raised premiums or exited the market. By 2020, sales of traditional policies had dropped to 49,000 and the number of carriers offering plans had fallen to fewer than a dozen from more than 100. 

Premiums for some consumers doubled in just a year or two. Three class-action lawsuits accused Genworth of failing to disclose to policyholders that it had planned multiyear rate increases, leaving them without information they needed to decide whether to keep their policies. Genworth settled the lawsuits with offers to allow customers to adjust their policies, and in some cases it paid cash damage to those who accepted reduced benefits. The company did not admit wrongdoing.

The increases continue. AM Best, a rating agency, said in a report last November that Genworth “will continue to need annual rate increases for at least several more years to reach economic break-even.” 

Prices for new policies have jumped, too. A decade ago, a couple aged 55 could expect to pay about $3,725 a year for a policy that included $162,000 in total benefits and 3% annual inflation protection, according to the American Association for Long-Term Care Insurance. Today, a policy that is virtually the same would cost $5,025, 35% more, even as rising health costs and inflation have eroded the value of the benefits. 

And that’s only for the people who can qualify. To limit their losses, insurers have narrowed the eligible pool of clients. In 2021, about 30% of applicants ages 60 to 64 were denied long-term care insurance. For applicants 70 to 74, the rejection rate was 47%. Even among people in their 50s, more than 1 in 5 were turned down. Chronic health conditions, a history of stroke or diabetes, or psychiatric illness may all be grounds for disqualification. 

At the same time, insurers began scrutinizing claims more closely. “They tightened their belts,” said Alan Kassan, a senior partner with the California law firm Kantor & Kantor, which represents clients challenging denials. “Then they tightened their claim administration and started denying claims more and more.” 

In 2022, the proportion of traditional long-term care claim denials varied, from 4.5% in Rhode Island to 9.6% in Alaska, according to the National Association of Insurance Commissioners

Despite efforts to limit liability, financial problems forced several high-profile insurance providers to drastically revise policy terms and premiums or go into insolvency, affecting the investments of thousands of clients. 

They included Alice Kempski, a retired nurse who, after her husband died, bought a policy from the insurance company Penn Treaty and American Network in 2004 on the advice of a financial adviser, paying premiums of $180 a month for 16 years. By 2017, she was hobbled by osteoporosis and was struggling to manage her multiple medications, according to her daughter, Ann Kempski. She sold the family home in Wilmington, Delaware, in 2017 and, now needing help bathing, moved to an assisted living center there. But when the family tried to file a claim, they discovered that Penn Treaty was insolvent and the policy had been taken over by the Pennsylvania state insurance guaranty fund. 

The fund had frozen Kempski’s benefits and increased her premiums to about $280 a month, her daughter said. Her doctor told Penn that she had “mild dementia” and osteoporosis and should be in an assisted living facility. But the insurer said that there was not enough evidence that she needed help with two daily living activities or had severe cognitive impairment, conditions that would trigger coverage, according to correspondence between Kempski and the company. 

Kempski was paying roughly $5,400 a month out-of-pocket to the assisted living center. She moved in with her daughter when the pandemic hit, but she continued to pay full rent to the facility to save her spot until she returned in 2021. In March of that year, when her daughter was preparing to refile a claim for long-term care insurance and her premiums had reached $320 a month, Kempski had a massive stroke. She died the next month. The insurer never paid for any of her care. 

Coverage in a Facility but Not at Home

A photo of an elderly woman's son taking care of her while she sits in a chair.Jewell Thomas’ children jointly pay about $4,000 a month for two home health aides, while still paying her long-term care insurance premium of more than $2,500 a year.(Bryan Meltz for The New York Times)

The policy held by Angela Jemmott’s mother, Jewell Thomas, went unused for a different reason: Like many older policies, it covered only skilled nursing care in a facility. Her children had purchased the policy after Thomas’ husband died at 56. 

But decades later, once Thomas developed dementia in her 80s, her children realized how desperately their mother wanted to stay home. Jemmott said they tried to add a rider to the policy to cover home care but were told that their mother’s age (older than 75) barred add-ons. Now the siblings jointly pay about $4,000 a month for two home health aides, while still paying the insurance premium of more than $2,500 a year. “We feel like if we stop paying it, another unforeseen need will arise and cause us to wish we kept it,” Jemmott said. 

Not all policyholders are displeased. 

Bert Minushkin, of Royal Palm Beach, Florida, paid monthly premiums for 27 years, beginning in 1993 when the policy was offered as a benefit by Westinghouse Electric Corp., where he worked as a nuclear engineer. Over time, he paid about $120,000 toward the policy, said his daughter Lisa Heffley, 61, of Louisville, Kentucky. 

Diagnosed with dementia, Minushkin began declining swiftly in 2019. His wife spent $220,000 on assisted living facilities and private aides for him over three years, with about $90,000 of the cost offset by his policy, Heffley said. He died in February 2022 at age 91. 

“He didn’t break even, but thank God he had it,” she said. 

Turning to Crowdfunding

A photo of a man posing for a photo surrounded by black-eyed Susan flowers.Without warning, Jeffrey Tanck had to assume charge of his father’s care, moving him into an assisted living center, and get his mother into a skilled nursing facility.(Shuran Huang for The New York Times)

Many experts say what’s needed is a government-subsidized or public program that requires people to carry long-term care insurance, as the Netherlands and Singapore have. But federal efforts to create such a system, including the CLASS Act, which was repealed in 2013, and the WISH Act, introduced in 2021, have failed to gain traction in Congress. At the state level, Washington this summer started a first-in-the-nation program that will provide long-term care benefits for residents who pay into a fund, but the maximum benefit of $36,500 will not cover a year in most assisted living facilities.

Lack of a safety net leaves some people unprotected, like Jeffrey Tanck, a real estate broker in Washington, D.C. In 2021, his mother, Sue Tanck, at 75, suffered a serious fall, leaving her with broken arms and a traumatic brain injury. She had been the primary caretaker for his father, Roger, then 77, who had rapidly worsening dementia. 

Without warning, Jeffrey Tanck had to assume charge of his father’s care, moving him into an assisted living center in Ocala, Florida, that now charges $4,600 a month, and had to get his mother into a skilled nursing facility paid for by Medicaid. With no money to cover his father’s costs until he sold their house, Tanck resorted to a plea on the crowdfunding site GoFundMe. 

Wanting to shield himself from a similar financial crisis somewhere down the road, Tanck, who is 51, applied for long-term care insurance, only to be denied. The reason? He takes antidepressants, which help him cope with the anxiety and stress of caring for his parents. 

“What are people supposed to do?” Tanck asked. “I’m going to need something.” 

Jordan Rau:,

JoNel Aleccia:


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What Would a DeSantis Presidency Look Like for Health Care?
Fri, 24 Nov 2023 13:15:06 +0000

On the presidential campaign trail, Republican Ron DeSantis touts himself as a champion of medical freedom, outlawing vaccine mandates and protecting doctors who refuse to provide certain medical treatments on moral grounds.

His record as Florida’s governor suggests a presidency that would prioritize individual freedom over public health, but his push for such freedoms ends when it comes to abortion and treatment for gender dysphoria. In Florida, he has pushed restrictions on those medical services.

Critics contend those were the wrong priorities in a state where 7.4% of children had no medical insurance as of 2022. Since then more than 250,000 Florida children have lost the health insurance they had through Medicaid.

The DeSantis campaign did not return multiple requests for comment on the governor’s health policy campaign plans.

As he sets his sights on the White House, here’s a recap of his health care record:

Public Health

At campaign stops, DeSantis talks often of his handling of the covid-19 pandemic even as the issue has largely disappeared from the public’s radar.

DeSantis initially followed federal health guidance and ordered a statewide lockdown in April 2020. But the governor quickly changed course, beginning a phased reopening of Florida just one month later. Around then, Florida’s then-surgeon general, Scott Rivkees, was hustled out of a news conference and hardly seen for months after he said residents might have to socially distance themselves from others and wear masks until vaccines became available.

Florida was one of four states that reopened schools in August 2020, and DeSantis banned cities and counties from enforcing mask mandates. He later suspended local pandemic restrictions and outlawed vaccine passports.

DeSantis did initially champion covid-19 vaccines, especially for Florida’s older adults. That changed in 2021, when DeSantis appointed Joseph Ladapo as his next surgeon general. A Harvard-trained doctor, Ladapo had gained prominence as a skeptic of the scientific consensus on how to treat and prevent the spread of the virus.

Subsequently, Florida was the only state not to preorder covid-19 vaccine doses for children under 5 when those became available in 2022. At news conferences, DeSantis publicized covid-19 treatments such as monoclonal antibodies but didn’t urge residents to get vaccinated.

Later, DeSantis’ health department recommended against vaccines for young men and against people under 65 getting updated vaccines, guidance that contradicted that of the U.S. Centers for Disease Control and Prevention.

DeSantis as president would likely downplay the importance of the CDC, which is an advisory body, and instead might require states to invest more in public health infrastructure, said Jay Wolfson, a public health professor at the University of South Florida.

The pandemic exposed that Florida’s public health system had been underfunded and largely ignored by successive administrations, including DeSantis’, Wolfson said. Having led Florida through hurricanes Ian and Idalia, DeSantis may want a similar response to public health emergencies like covid-19, where states take the lead and the federal government’s role is to support them, he said.


DeSantis has said he supports a “culture of life.” As governor, he’s signed the most anti-abortion modern-day legislation Florida has seen. But he has faced pushback from the anti-abortion crowd for his initial reluctance to endorse a federal ban and from other anti-abortion Republicans for signing a ban on most abortions after six weeks of pregnancy, which some have said is too extreme.

That bill, which DeSantis signed this year, has exceptions for rape, incest, and human trafficking up to 15 weeks into the pregnancy if the woman seeking an abortion has documentation proving her circumstances.

That bill has not taken effect, because of a pending court challenge over Florida’s current 15-week abortion ban, which DeSantis signed in 2022. That law does not have any exceptions for victims of rape or incest but does have exceptions for the health of the mother.

Opponents of Florida’s abortion restrictions say the threat of a felony arrest for violating the law makes it difficult for a doctor to provide an abortion they think is necessary.

After months of declining to directly answer whether he would support a nationwide abortion ban, DeSantis said during the second GOP presidential primary debate that he would sign a 15-week federal abortion ban.

The issue remains a difficult one for Republicans. A recent successful ballot measure in Ohio suggests that preserving abortion rights remains an effective issue for Democrats to drive turnout.

With Florida’s ban held up in legal challenges, the state continues to be one of the biggest providers of abortions in the Southeast. About 65,000 abortions have been recorded by the Florida Agency for Health Care Administration so far this year. Almost 6,000 were for out-of-state residents.


Even as states long opposed to Medicaid expansion such as South Dakota and North Carolina have recently reversed course, Florida remains in a group of 10 holdout states that refuse to expand the program as part of the Affordable Care Act.

The act provides extra federal funding to states that increase eligibility. In Florida’s case, doing so would help an estimated 514,000 residents gain health coverage, according to an October analysis by the Urban Institute.

Florida has had one of the highest child uninsured rates for many years, higher than poorer states such as neighboring Alabama, another state that has refused to expand Medicaid, said Joan Alker, executive director at the Georgetown University Center for Children and Families.

Almost 823,000 Floridians have lost Medicaid coverage since April, when states could remove recipients for the first time since the pandemic began. That includes at least 250,000 children. It’s unknown how many of those children are now covered through their parents’ insurance. But despite the state’s reassurance that kids who lose coverage would be referred to child health insurance programs like KidCare, Democratic state and federal lawmakers point to enrollment in the state program rising by only 25,000 children.

Florida is also the only state that has not taken advantage of federal waivers that would enable the state to keep more people on Medicaid while it transitions back to normal Medicaid operation.

Wolfson said Florida’s position reflects DeSantis’ belief that the program has become “an expensive and overextended giveaway” that discourages people from working hard to better their lives.

“We’re not going to be like California and have massive numbers of people on government programs without work requirements,” DeSantis said during the second Republican debate when asked why Florida’s uninsured rate — 11.2% in 2022, according to U.S Census Bureau estimates — was higher than the national average, which was 8%.

DeSantis has, however, approved bills that expanded Medicaid coverage based on needs, an approach that may be more illustrative of his handling of the health insurance program should he end up in the White House.

In 2021, DeSantis signed a bill to extend postpartum Medicaid coverage to up to 12 months. This year, he approved legislation for Medicaid to cover glucose monitors and for family members who are 18 or older to be able to be trained and paid under Medicaid as home health aides for medically fragile child relatives.

DeSantis also signed a bill to make more lower-income families eligible for KidCare, a set of child health insurance programs.

Gender Dysphoria Care

Like other GOP-led states, Florida has restricted the rights of transgender minors to access treatments such as puberty blockers and hormone therapy.

Florida health officials in 2022 approved rules prohibiting minors from accessing treatment for gender dysphoria. They then in 2023 prohibited minors from accessing that treatment even in clinical trials.

This past legislative session, Florida lawmakers passed a bill codifying that rule, which DeSantis signed into law. The decision runs counter to recommendations from major medical organizations. The legislation also requires that, for adults, gender dysphoria care, which the state calls “sex-reassignment prescriptions or procedures,” can be administered only by a physician.

In 2022, DeSantis’ administration published a report that created the foundation for a rule that prohibited Medicaid from covering gender dysphoria treatments for both minors and adults. To create the report, the Florida health agency veered from its standard protocol and brought in consultants who had known views that ran counter to major medical organizations’ guidance.

A judge has since struck that Medicaid ban down, but lawyers are arguing in court that DeSantis’ administration has been willfully defying the order and has continued to implement the Medicaid ban.

Medical Freedom

Earlier this year, DeSantis declared Florida the “medical freedom” state as he signed into law protections for medical providers who turn away patients on “conscience” grounds.

The law provides similar protections for insurance companies.

Opponents of the legislation worry it will allow doctors to discriminate against LGBTQ+ people or other groups. The legislation does not allow someone to opt out of providing care because of “race, color, religion, sex, or national origin.”

Federal laws protect health care workers from having to provide abortions if doing so goes against their personal beliefs. Florida’s new law is much broader, allowing a medical professional to deny nearly any procedure if it goes against their conscience.

This article was produced in partnership with the Tampa Bay Times.

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Back Pain? Bum Knee? Be Prepared to Wait for a Physical Therapist
Tue, 28 Nov 2023 12:49:04 +0000

At no point along his three-year path to earning a degree in physical therapy has Matthew Lee worried about getting a job.

Being able to make a living off that degree? That’s a different question — and the answer is affecting the supply of physical therapists across the nation: The cost of getting trained is out of proportion to the pay.

“There’s definitely a shortage of PTs. The jobs are there,” said Lee, a student at California State University-Sacramento who is on track to receive his degree in May. “But you may be starting out at $80,000 while carrying up to $200,000 in student debt. It’s a lot to consider.”

As many patients seeking an appointment can attest, the nationwide shortage of PTs is real. According to survey data collected by the American Physical Therapy Association, the job vacancy rate for therapists in outpatient settings last year was 17%.

Wait times are generally long across the nation, as patients tell of waiting weeks or even months for appointments while dealing with ongoing pain or post-surgical rehab. But the crunch is particularly acute in rural areas and places with a high cost of living, like California, which has a lower ratio of therapists to residents — just 57 per 100,000, compared with the national ratio of 72 per 100,000, according to the association.

The reasons are multifold. The industry hasn’t recovered from the mass defection of physical therapists who fled as practices closed during the pandemic. In 2021 alone, more than 22,000 PTs — almost a tenth of the workforce — left their jobs, according to a report by the health data analytics firm Definitive Healthcare.

And just as baby boomers age into a period of heavy use of physical therapy, and covid-delayed procedures like knee and hip replacements are finally scheduled, the economics of physical therapy are shifting. Medicare, whose members make up a significant percentage of many PT practices’ clients, has cut reimbursement rates for four years straight, and the encroachment of private equity firms — with their bottom-line orientation — means many practices aren’t staffing adequately.

According to APTA, 10 companies, including publicly held and private equity-backed firms, now control 20% of the physical therapy market. “What used to be small practices are often being bought up by larger corporate entities, and those corporate entities push productivity and become less satisfying places to work,” said James Gordon, chair of the Division of Biokinesiology and Physical Therapy at the University of Southern California.

There’s a shortage of physical therapists in all settings, including hospitals, clinics, and nursing homes, and it’s likely to continue for the foreseeable future, said Justin Moore, chief executive of the physical therapy association. “Not only do we have to catch up on those shortages, but there are great indicators of increasing demand for physical therapy,” he said.

The association is trying to reduce turnover among therapists, and is lobbying Congress to stop cutting Medicare reimbursement rates. The Centers for Medicare & Medicaid Services plans a 3.4% reduction for 2024 to a key metric that governs pay for physical therapy and other health care services. According to the association, that would bring the cuts to a total of 9% over four years.

Several universities, meanwhile, have ramped up their programs — some by offering virtual classes, a new approach for such a hands-on field — to boost the number of graduates in the coming years.

“But programs can’t just grow overnight,” said Sharon Gorman, interim chair of the physical therapy program at Oakland-based Samuel Merritt University, which focuses on training health care professionals. “Our doctoral accreditation process is very thorough. I have to prove I have the space, the equipment, the clinical sites, the faculty to show that I’m not just trying to take in more tuition dollars.”

All of this also comes at a time when the cost of obtaining a physical therapy doctorate, which typically takes three years of graduate work and is required to practice, is skyrocketing. Student debt has become a major issue, and salaries often aren’t enough to keep therapists in the field.

According to the APTA’s most recent published data, median annual wages range from $88,000 to $101,500. The association said wages either met or fell behind the rate of inflation between 2016 and 2021 in most regions.

A project underway at the University of Iowa aims to give PT students more transparency about tuition and other costs across programs. According to an association report from 2020, at least 80% of recent physical therapy graduates carried educational debt averaging roughly $142,000.

Gordon said USC, in Los Angeles’ urban core, has three PT clinics and 66 therapists on campus, several of whom graduated from the school’s program. “But even with that, it’s a challenge,” he said. “It’s not just hard to find people, but people don’t stay, and the most obvious reason is that they don’t get paid enough relative to the cost of living in this area.”

Fewer therapists plus growing demand equals long waits. When Susan Jones, a Davis, California, resident, experienced pain in her back and neck after slipping on a wet floor in early 2020, she went to her doctor and was referred for physical therapy. About two months later, she said, she finally got an appointment at an outpatient clinic.

“It was almost like the referral got lost. I was going back and forth, asking, ‘What’s going on?’” said Jones, 57. Once scheduled, her first appointment felt rushed, she said, with the therapist saying he could not identify an issue despite her ongoing pain. After one more session, Jones paid out-of-pocket to see a chiropractor. She said she’d be hesitant to try for a physical therapy referral in the future, in part because of the wait.

Universities and PT programs graduate about 12,000 therapists a year, Moore said, and representatives of several schools told KFF Health News they’re studying whether and how to expand. In 2018, USC added a hybrid model in which students learn mostly online, then travel to campus twice a semester for about a week at a time for hands-on instruction and practice.

That bumped USC’s capacity from 100 students a year to 150, and Gordon said many of the hybrid students’ professional skills are indistinguishable from those of students on campus full time.

Natalia Barajas received her PT doctorate from USC last year and was recently hired at a clinic in nearby Norwalk, with a salary of $95,000, a signing bonus, and the opportunity to earn more in incentives.

She’s also managing a lot of debt. Three years of tuition for the USC physical therapy program comes to more than $211,000, and Barajas said she owes $170,000 in student loans.

“If it were about money alone, I probably would have shifted to something else a while ago,” Barajas said. “I’m OK with my salary. I chose to do this. But it might not be the perfect situation for everybody.”

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

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


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Backlash to Affirmative Action Hits Pioneering Maternal Health Program for Black Women
Fri, 24 Nov 2023 14:16:02 +0000

For Briana Jones, a young Black mother in San Francisco, a city program called the Abundant Birth Project has been a godsend.

Designed to counter the “obstetric racism” that researchers say leads a disproportionate number of African American mothers to die from childbirth, the project has provided 150 pregnant Black and Pacific Islander San Franciscans a $1,000 monthly stipend.

The money enabled Jones, 20, to pay for gas to drive to prenatal clinics, buy fresh fruits and vegetables for her toddler son and herself, and remain healthy as she prepared for the birth of her second child last year.

But the future of the Abundant Birth Project is clouded by a lawsuit alleging that the program, the first of its kind in the nation, illegally discriminates by giving the stipend only to people of a specific race. The lawsuit also targets San Francisco guaranteed-income programs serving artists, transgender people, and Black young adults.

The litigation is part of a growing national effort by conservative groups to eliminate racial preferences in a wide range of institutions following a U.S. Supreme Court ruling that found race-conscious admissions to colleges and universities to be unconstitutional.

In health care, legal actions threaten efforts to provide scholarships to minority medical school students and other initiatives to create a physician workforce that looks more like the nation.

The lawsuits also endanger other measures designed to reduce well-documented racial disparities. Black women are three to four times more likely than white women to die in labor or from related complications in the U.S., and Black infants are twice as likely as white infants to be born prematurely and to die before their first birthdays. Racial and ethnic minorities also are more likely to die from diabetes, high blood pressure, asthma, and heart disease than their white counterparts, according to the Centers for Disease Control and Prevention.

A handful of activist nonprofit groups and law firms are leading the charge. Do No Harm, a nonprofit formed in 2022, has sued health commissions, pharmaceutical companies, and public health journals to try to stop them from choosing applicants based on race. Do No Harm claims more than 6,000 members worldwide and partners with nonprofit legal organizations, most notably the Pacific Legal Foundation, which garnered national attention when it defended California’s same-sex marriage ban.

Another nonprofit, the Californians for Equal Rights Foundation, together with a Dallas-based law firm called the American Civil Rights Project, filed the lawsuit against the city of San Francisco and the state of California over the Abundant Birth Project, alleging the program violates the equal protection clause of the Constitution’s 14th Amendment by granting money exclusively to Black and Pacific Islander women. The 14th Amendment was passed after the Civil War to give rights to formerly enslaved Black people.

The lawsuit calls public money used for the project and the three other guaranteed-income programs “discriminatory giveaways” that are “illegal, wasteful, and injurious.”

“The city and county of San Francisco crafted the Abundant Birth Project with the express intention of picking beneficiaries based on race,” Dan Morenoff, executive director of the American Civil Rights Project, said in a phone interview. “It’s unconstitutional. They can’t legally do it, and we are optimistic that the courts will not allow them to continue to do it.”

San Francisco and state officials declined to discuss the case because of the pending litigation, but the city defended the program in its initial response to the lawsuit. The Abundant Birth Project started in June 2021 and plans to make a second round of grants to pregnant mothers this fall, the response says.

The project strives to improve maternal and infant health outcomes by easing the economic stress on pregnant Black and Pacific Islander San Franciscans. People in those groups face some of the worst outcomes in the U.S., where more women die as a result of pregnancy and childbirth than in other high-income nations. The state of California last year awarded $5 million to expand the program to include Black mothers in four other counties.

But Khiara Bridges, a Berkeley law professor and anthropologist who has talked to beneficiaries of the Abundant Birth Project but is not directly involved with it, said the Supreme Court ruling on college affirmative action could actually support the argument that the program is legal.

The court struck down affirmative action in part because the majority said Harvard and the University of North Carolina failed to show measurable outcomes justifying race consciousness in college admissions. While statistics on potential benefits from the Abundant Birth Project are not publicly available, Bridges and others familiar with the program expect researchers to demonstrate it saves and improves lives by comparing the health outcomes of families who received the stipend with those of families who did not. The outcomes could justify employing race to choose program participants, Bridges said.

Bridges also drew another distinction between the role of race in college admissions and the role of race in health disparities.

“If you don’t get into Harvard, there’s always Princeton or Columbia or Cornell,” she said. “Maternal death — the stakes are a little bit higher.”

When Briana Jones was pregnant with her second son, Adonis, a San Francisco program called the Abundant Birth Project enabled her to pay for gas for prenatal appointments, find housing, feed her toddler son, and remain healthy as she prepared to welcome her second child. The program has provided 150 pregnant Black and Pacific Islander San Franciscans a $1,000 monthly stipend. (Briana Jones)
While Briana Jones was pregnant with the younger of her two sons, she qualified through San Francisco’s Abundant Birth Project as one of nearly 150 women to receive a $1,000-a-month stipend during her pregnancy and for six months postpartum. (Briana Jones)

In California, a voter initiative, Proposition 209, has prohibited race-based selection in public education and employment since 1996. California Assembly member Mia Bonta (D-Oakland) has co-authored a pending bill that would amend the proposition to allow municipalities to grant benefits to specific groups of vulnerable people if they use research-based measures that can reduce health and other disparities.

Bonta, a law school graduate, told KFF Health News that the litigation against the Abundant Birth Project is the result of “conservative groups who want to exist in a world that doesn’t exist, where communities of color have not had to suffer the generational harm that comes from structural racism.”

Bonta has more than once been a victim of medical racism herself.

When she went to the hospital with a serious back injury, she was interrogated by a doctor who appeared to believe she was faking pain so she could obtain drugs.

“But for the intervention of my husband, who happened to be there and moved into health advocacy mode, I, as a Black Latina woman, would not have received the care that I needed,” she said. Bonta’s husband, Rob Bonta, is also a lawyer and is now California’s attorney general.

Briana Jones experiences racism every day, she said.

She was 15 when she gave birth to her first child in a San Francisco hospital. Terrified and in agonizing pain, she did what laboring mothers have always done and screamed.

A nurse ordered her to “shut up.”

In the U.S., Black women are far more likely than white women to report that health care providers scolded, threatened, or shouted at them during childbirth, research shows. They also face other forms of obstetric racism, including barriers to quality care and cumulative stress from lifelong discrimination.

Growing up Black in predominantly white and Asian San Francisco has been a struggle for Jones. But, while carrying her second baby last year, she learned from her mother of the Abundant Birth Project, and within a month, her race and address in Bayview Hunters Point, where some of the city’s poorest residents live, qualified her as one of nearly 150 women to receive the $1,000 a month during her pregnancy and for six months postpartum.

“I really did feel like it was God helping me,” she said.

For Morenoff, though, it’s just another form of discrimination, and he says the city must either open the Abundant Birth Project to all pregnant women or close it down. “The whole point of the 14th Amendment is to require America to treat all Americans as Americans with the same equal rights,” he said.

Jones had high blood pressure, leading to swollen ankles and dizziness, during both her pregnancies. In her more recent one, the birth project stipend helped enable her to quit couch surfing and move into an apartment, and she gave birth to a healthy boy named Adonis.

“It’s known that people of color struggle way harder than other races,” Jones said. “Where I live, it’s nothing but struggle here, people trying to make ends meet.”

“For them to try to take this program away from us,” she said, “it’s wrong.”

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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Many Autoimmune Disease Patients Struggle With Diagnosis, Costs, Inattentive Care
Mon, 27 Nov 2023 12:25:07 +0000

After years of debilitating bouts of fatigue, Beth VanOrden finally thought she had an answer to her problems in 2016 when she was diagnosed with Hashimoto’s disease, an autoimmune disorder.

For her and millions of other Americans, that’s the most common cause of hypothyroidism, a condition in which the thyroid, a butterfly-shaped gland in the neck, doesn’t produce enough of the hormones needed for the body to regulate metabolism.

There’s no cure for Hashimoto’s or hypothyroidism. But VanOrden, who lives in Athens, Texas, started taking levothyroxine, a much-prescribed synthetic thyroid hormone used to treat common symptoms, like fatigue, weight gain, hair loss, and sensitivity to cold.

Most patients do well on levothyroxine and their symptoms resolve. Yet for others, like VanOrden, the drug is not as effective.

For her, that meant floating from doctor to doctor, test to test, and treatment to treatment, spending about $5,000 a year.

“I look and act like a pretty energetic person,” said VanOrden, 38, explaining that her symptoms are not visible. “But there is a hole in my gas tank,” she said. And “stress makes the hole bigger.”

Beth VanOrden, wearing glasses and a purple sweater, smiles at the camera in this selfie-style photograph.Beth VanOrden was diagnosed in 2016 with the autoimmune disorder Hashimoto’s disease. The most common drug to treat symptoms of the incurable condition was not effective for her, however. The quest for other treatments proved costly.(Beth VanOrden)

Autoimmune diseases occur when the immune system mistakenly attacks and damages healthy cells and tissues. Other common examples include rheumatoid arthritis, lupus, celiac disease, and inflammatory bowel disease. There are more than 80 such diseases, affecting up to an estimated 50 million Americans, disproportionately women. Overall, the cost of treating autoimmune diseases is estimated at more than $100 billion annually in the U.S.

Despite their frequency, finding help for many autoimmune diseases can prove frustrating and expensive. Getting diagnosed can be a major hurdle because the range of symptoms looks a lot like those of other medical conditions, and there are often no definitive identifying tests, said Sam Lim, clinical director of the Division of Rheumatology at Emory University School of Medicine in Atlanta. In addition, some patients feel they have to fight to be believed, even by a clinician. And after a diagnosis, many autoimmune patients rack up big bills as they explore treatment options.

“They’re often upset. Patients feel dismissed,” Elizabeth McAninch, an endocrinologist and thyroid expert at Stanford University, said of some patients who come to her for help.

Insufficient medical education and lack of investment in new research are two factors that hinder overall understanding of hypothyroidism, according to Antonio Bianco, a University of Chicago endocrinologist and leading expert on the condition.

Some patients become angry when their symptoms don’t respond to standard treatments, either levothyroxine or that drug in combination with another hormone, said Douglas Ross, an endocrinologist at Massachusetts General Hospital in Boston. “We will have to remain open to the possibility that we’re missing something here,” he said.

Jennifer Ryan, 42, said she has spent “thousands of dollars out-of-pocket” looking for answers. Doctors did not recommend thyroid hormone medication for the Huntsville, Alabama, resident — diagnosed with Hashimoto’s after years of fatigue and weight gain — because her levels appeared normal. She recently switched doctors and hopes for the best.

“You don’t walk around hurting all day long and have nothing wrong,” Ryan said.

And health insurers typically deny coverage of novel hypothyroidism treatments, said Brittany Henderson, an endocrinologist and founder of the Charleston Thyroid Center in South Carolina, which sees patients from all 50 states. “Insurance companies want you to use the generics even though many patients don’t do well with these treatments,” she said.

Meanwhile, the extent of Americans’ thyroid problems can be seen in drug sales. Levothyroxine is among the five most prescribed medications in the U.S. every year. Yet research points to some overprescribing of the drug for those with mild hypothyroidism.

A recent study, paid for by AbbVie — maker of Synthroid, a brand-name version of levothyroxine — said a medical and pharmacy claims database showed that the prevalence of hypothyroidism, including milder forms, rose from 9.5% of Americans in 2012 to 11.7% in 2019.

The number of people diagnosed will rise as the population ages, said McAninch. Endocrine disruptors — natural or synthetic chemicals that can affect hormones — could account for some of that increase, she said.

In their search for answers, patients sometimes connect on social media, where they ask questions and describe their thyroid hormone levels, drug regimens, and symptoms. Some online platforms offer information that’s dubious at best, but overall, social media outlets have increased patients’ understanding of hard-to-resolve symptoms, Bianco said.

They also offer one another encouragement.

VanOrden, who has been active on Reddit, has this advice for other patients: “Don’t give up. Continue to advocate for yourself. Somewhere out there is a doctor who will listen to you.” She has started an alternative treatment — desiccated thyroid medication, an option not approved by the FDA — plus a low dose of the addiction drug naltrexone, though the data is limited. She’s feeling better now.

Research of autoimmune thyroid disease gets little funding, so the underlying causes of immune dysfunction are not well studied, Henderson said. The medical establishment hasn’t fully recognized hard-to-treat hypothyroid patients, but increased acknowledgment of them and their symptoms would help fund research, Bianco said.

“I would like a very clear, solid acknowledgment that these patients exist,” he said. “These people are real.”

For an illustrated version of this article, click here.

Andy Miller:,

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Progressive and Anti-Abortion? New Group Plays Fast and Loose to Make Points
Mon, 27 Nov 2023 18:31:03 +0000

This summer pedestrians, drivers, and passengers in Washington, D.C., saw a new type of graffiti among the usual urban scrawls: anti-abortion advocacy designed to troll this ultra-blue city. On sidewalks, on bridge overpasses, and near Metro stations some people had stenciled or spray-painted missives like “Be Gay: Ban Abortion” and, in stylized lettering, “Abortion Is Murder.”

The messaging was likely a shock in Washington. The graffiti reflects part of a surprising segment of the ideological spectrum: anti-abortion using the language of the radical left.

One group on the vanguard of an increasingly confrontational anti-abortion movement is Progressive Anti-Abortion Uprising, which operates mostly in the nation’s capital. They ’ve embraced all types of media and a good dose of misinformation to communicate a smashmouth message. One member of the group, Caroline Smith, boasted that they want to make people “uncomfortable.” Their activities have also gotten several members convicted of trespassing and obstructing abortion clinics.

Demonstrations like these, which involve rowdy, obstructive protests livestreamed over the internet, have gotten more scrutiny, especially since the Supreme Court overturned the constitutional right to abortion. Since the beginning of the Biden administration, the Department of Justice has used the Freedom of Access to Clinic Entrances Act to protect access to abortion clinics. As of June, it had pursued FACE Act cases against 48 defendants nationwide, with allegations ranging from shooting pellet guns into facilities to simply locking the gates with super glue.

Graffiti also is part of PAAU’s strategy, with the group’s social media providing instruction on “decorating public space,” celebrating defacement as “culture jamming.” (The group’s founder, Terrisa Bukovinac, told KFF Health News in an interview that she did not “know anything about the specifics” about whether PAAU had done any anti-abortion graffitiing in Washington this summer.) The group’s no-holds-barred strategies include livestreamed protests with combative counterprotesters and passersby.

In recent years, the group and its allies have been featured in livestreamed videos, some of which show protesters shouting combustible, misleading claims that have been rejected by medical experts and others. These livestreams include bystanders, patients, clinicians, and abortion rights activists, who, once they are on the livestream, risk becoming the subject of online attack, whether they are associated with the abortion clinic or not.

“It’s a vector for doxxing and honestly would be foolish to think it’s anything other than an aggression tactic,” said Daly Barnett of the Electronic Frontier Foundation, a digital rights group, speaking generally of livestreams and other social media about protests at abortion clinics. Doxxing describes a form of online attack in which someone’s personal information is made public without permission.

PAAU’s Bukovinac left a San Francisco anti-abortion organization in 2021 to help create this unorthodox group. She and some of her colleagues wanted to find “a space for themselves” on the ideological spectrum. The group’s website boasts of “progressive feminist values of equality” and members’ willingness to put their bodies “in between the oppressor and the oppressed.” But the use of graphic anti-abortion rhetoric drew a cold reception from what Bukovinac called the “leftist” part of the pro-life movement.

A photograph of graffiti written in white marker on a dilapidated wall. It reads, "be gay / ban abortion." Anti-abortion graffiti in the northeast of Washington, D.C. (Darius Tahir/KFF Health News)
A photograph of graffiti written in red marker behind a chain-link fence. It reads, "be gay / ban abortion." Anti-abortion graffiti in the northeast of Washington, D.C. (Darius Tahir/KFF Health News)

A Curious Fit

Despite its otherwise progressive verbiage on inclusion and gay rights, the group mixes quite naturally into the right. Bukovinac, for instance, is a faculty member at the Leadership Institute, a conservative training group endorsed by the likes of Rep. Jim Jordan (R-Ohio). She also attended a Heritage Foundation gala at which Tucker Carlson spoke.

She blames liberals for this strange company. “It should be embarrassing that I have to rely on Christofascists to end a genocide,” she said.

Politically, it’s a dissonant fit, too. Despite having made clear to documentarians that she didn’t vote in the 2020 election, she recently declared a Democratic presidential run. In her view, that’s because anti-abortion Democrats are underrepresented. Citing data of unspecified provenance, she claimed in an interview that a quarter of Democrats identify as pro-life, and that a majority say they want more restrictions on abortion. She said she intends to show graphic anti-abortion television ads as part of her campaign.

Her campaign is an escalation of the group’s all-media tactics, which include livestreaming videos across the internet, accessible far and wide.

One livestream documented a 2020 blockade of a Washington, D.C., abortion clinic. It became a right-wing cause célèbre after several activists, including Lauren Handy, PAAU’s director of activism, entered the clinic, injuring a person while blockading the rooms, and livestreamed the whole thing — later earning an arrest, indictment, and conviction under the FACE Act. Right now, five of the 10, including Handy, are appealing; defense counsel Martin Cannon says it’s “likely” a total of nine will appeal after sentencing. In March 2022, police found the remains of five fetuses in Handy’s house, which she said came from the clinic via a medical waste driver. The transport company disputed her account.

The group has enlisted multiple anti-abortion members of Congress, who have pressed their case — about the fairness of the prosecutions — to the Department of Justice and Washington city officials. More broadly, some congressional Republicans are gearing up to repeal the FACE Act. Former GOP presidential candidate Sen. Tim Scott (R-S.C.) even complained during the first primary debate that prosecutors were pursuing anti-abortion activists.

Whatever their appeals to the right wing, the group and their allies are careful to appeal to the left too. Before their October 2020 blockade in Washington, organizers planned to present an aggressive — yet also multicultural, progressive — image, according to prosecutors’ filings in federal district court, on the FACE Act charges. “The idea of deliberately breaking the law is sexy,” advised Jonathan Darnel, an evangelical Christian activist, about their language advertising the event. Later another activist counseled making the language seem “more woke,” according to text messages obtained by the government and provided in a trial brief.

Livestreams: A Digital Megaphone

In real time, the nearly three-hour livestreamed videos had a more Christian, conservative bent, with protesters blockading and subsequently getting arrested and featuring speakers extolling religious themes and praising “anti-abortion, anti-Sodomite” activists. An internet broadcast like this “presents the potential for martyrdom,” said Mackenzie Quick, an assistant professor at Flagler College who has studied the rhetoric of anti-abortion movements. She thinks such streams might emerge as a common tactic for activists.

In the livestreamed videos, the protesters made typical anti-abortion claims in on-camera appearances, like that a fetus can feel pain at 12 weeks’ gestation, which the American College of Obstetricians and Gynecologists rejects.

The livestreams also employ a take-no-prisoners approach to identifying — or misidentifying — people who, whether intentionally or not, become part of the video. “This may be the abortionist,” Darnel said in the halls of the abortion clinic, of one potential target of the protest who walked in view of the camera. Then an offscreen speaker is heard telling him the person was an FBI agent.

At another point, Darnel speculated on the livestreamed video whether someone — it was unclear whom he was referring to — was a well-known, Washington, D.C.-based abortion rights activist. Then he changed his mind: “Oh wait, we don’t know — we don’t know who she is,” he said.

Darnel summarily dismissed any potential concerns with his behavior. In a message to KFF Health News, he asked, given his opposition to abortion, why would he “be concerned with the privacy of the murderers or the corrupted police who sought to protect those murderers?” Days later, asked about a different subject, he added that these concerns are raised only against anti-abortion protesters.

It’s not illegal in Washington, D.C., to film people in public without their consent, but the progressive anti-abortion types are “very media-oriented and they’re very noisy and aggressive,” said Megan S., who helps run a volunteer group that escorts patients to appointments. She and other clinic escort volunteers are very aware of the risks of being identifiable. (Megan S. withheld her last name to protect herself from such risks.)

On the side of a metal pillar, graffiti is loosely written in black marker. It says, "if abortion is a social good, then act like it." The black marker has written over white marker, which faintly reads, "abortion is murder."Anti-abortion graffiti in the northeast of Washington, D.C. (Darius Tahir/KFF Health News)

Exposing or potentially misrepresenting identities became a thorny point during the trial on the October 2020 obstruction, at which both Darnel and Handy were defendants.

The proceedings were marked by multiple clashes pitting expression and publicity against protecting courtroom deliberations.

Some pro-life activists, who Bukovinac maintained were unaffiliated with the progressives, protested outside the courthouse when jury selection began.

Once the trial began, the conflicts continued, with the judge raising concerns that activists’ audible comments constituted witness tampering, Bukovinac said. The trial record showed the judge ultimately granted requests from prosecutors to shield witnesses’ identities and restrict the dissemination of discovery material to only the defense team members.

The defense also attempted to introduce photos and videos of fetuses and a video of the clinic’s doctor purportedly describing what he does to fetuses post-abortion, which counsel claimed would justify Handy’s belief that fetuses were born alive before being killed. But the judge ruled that the photos were “particularly incendiary.” She wrote that the defendants planned to mischaracterize the video, which she said was “propaganda.”

The case is set to get tested in the appeals court, where some anti-abortion advocates see an opportunity to undo the FACE Act, which was designed to regulate these made-for-social-media protests that have become a signature of PAAU.

That’s the hope of Cannon, senior counsel at the Thomas More Society, an anti-abortion public interest law firm representing one of the defendants. The law is questionably constitutional, despite its nearly 30-year history, he said. “We’re not tilting at windmills.”

If the courts won’t end the law, the activists’ next best hope may be their congressional allies. The Progressive Anti-Abortion Uprising has rebranded one of its social media accounts previously devoted to providing trial updates “#RepealFACE.”

Darius Tahir:,

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