“Happy birthday” and “I’m proud of you” topped the phrases she banked for her husband and two daughters, as well as “I’ll be right with you,” intended for customers at the architecture firm she co-owns in Tucson, Arizona.

Thinking about the grandchildren she desperately hoped to see born one day, she also recorded herself reading more than a dozen children’s books, from the Eloise series to Dr. Seuss, to one day play for them at bedtime.

But one of the biggest categories of sound files she banked was a string of curse words and filthy sayings. If the voice is the primary expression of personality, sarcasm and profanity are essential to Sotinsky’s.

“When you can’t use your voice, it is very, very frustrating. Other people project what they think your personality is. I have silently screamed and screamed at there being no scream,” Sotinsky said recently, referring to rudimentary voice technology or writing notes by hand before she chanced upon a modern workaround. “What the literal you-know-what?”

Fighting invasive oral cancer at age 51 forced Sotinsky to confront the existential importance of the human voice. Her unique intonation, cadence, and slight New Jersey accent, she felt, were fingerprints of her identity. And she refused to be silenced.

While her doctors and insurance company saved her life, they showed little interest in saving her voice, she said. So she set out on her own to research and identify the artificial intelligence company that could. It used the recordings Sotinsky had banked of her natural voice to create an exact replica now stored in an app on her phone, allowing her to type and speak once again with a full range of sentiment and sarcasm.

“She got her sass back,” said Sotinsky’s daughter, Ela Fuentevilla, 23. “When we heard her AI voice, we all cried — my sister, my dad, and I. It’s crazy similar.”

‘Your Voice Is Your Identity’

It took close to a year for doctors to detect Sotinsky’s cancer. She complained to her orthodontist and dentist multiple times about jaw pain and a strange sensation under her tongue. Then water began dribbling down her chin when she drank. When the pain got so intense that she could no longer speak at the end of each day, Sotinsky insisted her orthodontist take a closer look.

“A shadow cast over his face. I saw it when he leaned back,” she said, “that look you don’t want to see.”

That’s when she started recording. In the five weeks between her diagnosis and surgery to remove her entire tongue and voice box — in medical terms, a total glossectomy and laryngectomy — she banked as much of her voice as she could manage.

“Your voice is your identity,” said , a radiation oncologist at the University of California-San Francisco, where Sotinsky got treatment. “Communication is not only how we express ourselves and relate to other people, but also how we make sense of the world.”

“When the voice is no longer available, you can’t hear yourself thinking out loud, you can’t hear yourself interacting with other people,” Yom said. “It impacts how your mind works.”

People who lose their voice box, she added, are at , depression, and physical pain compared with those who retain it after cancer treatment. Close to a , and the can be profound.

Most laryngectomy patients learn to , a small battery-operated box held against the throat that produces a monotonic, mechanical voice. But without a tongue to shape her words, Sotinsky knew that wouldn’t work for her.

When Sotinsky had her surgery in January 2022, AI voices were still in their infancy. The best technology she could find yielded a synthetic version of her voice, but it was still flat and robotic, and people strained to understand her.

She got by until mid-2024, when she read about tech companies using generative AI to replicate a person’s full range of natural inflection and emotion.

While companies can now re-create a person’s voice from snippets of old home movies or even a one-minute voicemail, 30 minutes is the sweet spot.

Sotinsky had banked hours reading children’s books aloud.

“Eloise saved my voice,” Sotinsky said.

Now she types what she wants to say into a text-to-speech app on her phone, , which translates and broadcasts her AI voice through portable speakers.

Most doctors and speech therapists who work with head-and-neck cancer patients don’t realize AI software can be used this way, Yom said, and with their focus on saving lives they often don’t have the bandwidth to encourage patients to record their voices before they lose them in surgery.

Health insurance companies likewise prioritize treatments that extend life over those that improve its quality — and typically avoid covering new technologies until data proves their actuarial value.

Sotinsky and her daughter spent months wrangling with claims adjusters at , but the insurer refused to reimburse Sotinsky for the $3,000 she spent on her initial assistive speaking technology.

“Apparently, having a voice is not considered a medical necessity,” Sotinsky quipped, her AI voice edged with sarcasm.

Sotinsky now pays the $99 monthly fee for her AI voice clone out-of-pocket.

“While health plans cover both routine and lifesaving care, assistive communication devices are typically not covered,” said , a spokesperson for Blue Cross Blue Shield of Arizona. “As AI provides opportunities to impact health, we imagine that coverage criteria will evolve nationally.”

Research Might Lead to Insurance Coverage

Sotinsky resolved to use her newfound voice to help others regain theirs. She stepped back from her work in architecture and built a website detailing her voice banking journey — ., was so inspired by hearing Sotinsky’s voice that she began laying the groundwork for a clinical trial on the impact AI technology has on patients’ communication and quality of life. That type of research could generate the data health insurers need to measure actuarial value — “and therefore justify coverage by insurance,” said De Los Santos, a head-and-neck cancer researcher and professor at Washington University in St. Louis.

Breast cancer survivors faced a similar battle in the 1980s and ’90s, she added. Insurers initially refused to cover the cost of breast reconstruction after a mastectomy, calling the procedure cosmetic and unnecessary.

It took years of patient advocacy and carefully crafted data showing reconstruction had a profound impact on women’s physical and emotional well-being before the federal government mandated insurance coverage in 1998.

Both De Los Santos and Yom said research data on AI voice clones will likely follow a similar path, eventually proving that a fully functioning, natural-sounding voice can lead to not only a better life, but a longer one.

In recent months, Sotinsky’s AI voice literally helped save her life. Her cancer had resurged in her lungs and liver. Her voice allowed her to communicate with her doctors and participate fully in developing the treatment plan. It showed her just how “medically necessary” having a voice is.

She noticed that doctors and nurses took her more seriously. They didn’t tune out the way people often did when she relied on her more robotic, synthesized voice. It seemed they saw her as more fully human.

“If someone can only communicate using a few words at a time, and not elaborate and interface more fully, it’s natural that you can’t detect that they have more depth of thought,” she said. “Being able to dialogue with my care team in a more seamless way is vital.”

While doctors successfully treated her latest round of cancer, Sotinsky, now 55, said she is confronting her odds in a new way, facing the reality that she will likely die much sooner than she wants.

All over again, she realized how crucial her voice is for maintaining perspective on life and a sense of humor in the face of death.

“I tend to forget and think I am fine, when in reality, this is forever now. Emotionally, you start to get cocky again, and this was like, Whoa, b****, we ain’t playing. This cancer is real,” Sotinsky said, typing her next phrase with a mischievous grin.

“Sarcasm is part of my love language.”

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Lu quería recibir ayuda, pero su plan de Medi-Cal no cubría la terapia a menos que tuviera el permiso de uno de sus padres o tutores.

Su madre, inmigrante china y madre soltera, trabajaba muchas horas para mantener a Fiona, a su hermano y a su abuela. Encontrar tiempo para explicarle a su madre en qué consistía la terapia y por qué la necesitaba le parecía una tarea imposible.

“No me la imaginaba firmando todos esos formularios y luego yendo a terapia conmigo”, dijo Lu, que ahora tiene 18 años y estudia primer año en la UCLA. “En las culturas inmigrantes existe esta idea de que tener problemas de salud mental y recibir tratamiento es un fenómeno de las culturas occidentales”.

En su último año de secundaria, Lu convirtió su experiencia en activismo. Hizo campaña para cambiar la política estatal y permitir que los menores a partir de los 12 años, que viven en hogares de bajos ingresos, reciban consejería de salud mental sin el consentimiento de sus padres.

En octubre del año pasado, el gobernador Gavin Newsom firmó una que amplió el acceso a los pacientes jóvenes cubiertos por Medi-Cal, el Medcaid de California.

Los adolescentes con seguro privado han tenido este privilegio en el estado durante más de una década. Sin embargo, los padres de los jóvenes que ya tenían la posibilidad de acceder a la atención por su cuenta fueron los que más se opusieron a la ampliación de esa cobertura de Medi-Cal.

Muchos padres aprovecharon el proyecto de ley para expresar sus quejas sobre el control que, en su opinión, ejerce el Estado sobre sus hijos, especialmente en lo relativo a la identidad de género y la atención de salud.

La primavera pasada, una madre que llamó a los terapeutas escolares “adoctrinadores” y dijo que el proyecto de ley les permitía llenar la cabeza de los niños con ideas sobre el “transexualismo” sin que sus padres lo supieran.

Estos argumentos se repitieron en las redes sociales y en las protestas que tuvieron lugar en California y otras partes del país a finales de octubre.

En el Capitolio de California, varios legisladores republicanos votaron en contra del proyecto de ley, AB 665. Uno de ellos fue el miembro de la Asamblea estatal James Gallagher, del condado de Sutter.

“Si mi hijo está sufriendo una crisis de salud mental, quiero saberlo”, declaró Gallagher, durante una sesión sobre el proyecto de ley en la Asamblea, la primavera pasada. “Esta tendencia equivocada, y creo que ilícita, en nuestra política actual que continúa excluyendo a los padres de la ecuación, diciendo que no necesitan ser informados, es un agravio”.

Los sueldos de los legisladores estatales son para que ellos o sus familias puedan tener Medi-Cal. En su lugar, se les ofrece la posibilidad de elegir entre , lo que significa que niños como los de Gallagher ya tienen los privilegios a los que se opuso en su discurso.

A Lu esto le pareció frustrante e hipócrita. Dijo que los opositores que se alineaban en contra del proyecto AB 665, en las audiencias legislativas, eran en su mayoría padres de clase media tratando de apropiarse del tema.

“No es creíble que aboguen contra una política que no les afecta directamente”, afirmó Lu. “No se dan cuenta de que se trata de una política que afectará a cientos de miles de otras familias”.

Los patrocinadores del proyecto AB 665 dijeron que agregaba sentido común a una ley existente. En 2010, los legisladores habían facilitado a los jóvenes el acceso a tratamientos ambulatorios de salud mental y a centros de acogida de emergencia sin el consentimiento de sus padres, al de tener que estar en medio de una crisis inminente para tener acceso.

Pero en el último momento, los legisladores eliminaron en 2010 la ampliación de la cobertura de Medi-Cal para los adolescentes por razones de costo. Más de una década después, el proyecto de ley AB 665 pretende acabar con la disparidad entre los seguros públicos y privados e igualar las condiciones.

“Se trata de equidad”, expresó la legisladora estatal , demócrata de Los Angeles y autora del proyecto de ley.

La ley original, que regulaba los planes de seguros privados, fue aprobada con apoyo bipartidista y contó con en la Legislatura, dijo. La ley fue firmada por un gobernador republicano, Arnold Schwarzenegger.

“Desde entonces, los extremos de ambos bandos se han vuelto tan radicales que nos cuesta hablar sobre la necesidad de la salud mental”, añadió.

Después que Carrillo presentara el proyecto de ley el año pasado, su oficina recibió amenazas de muerte. Ella aseguró que el objetivo de la ley no es dividir a las familias, sino fomentar la comunicación entre padres e hijos a través de la consejería.

Más de 20 estados permiten a los jóvenes dar su consentimiento para el tratamiento ambulatorio de salud mental sin el permiso de sus padres, incluyendo Colorado, Ohio, Tennessee y Alabama, según un realizado por investigadores de la Universidad Rowan.

Para los detractores de la nueva ley, como Erin Friday, una abogada del Área de la Bahía de San Francisco, AB 665 forma parte de una campaña más amplia para quitar derechos a los padres en California, algo a lo que ella se opone independientemente del tipo de seguro médico que tengan los niños.

Friday se considera demócrata de toda la vida. Pero un día descubrió que su hijo adolescente se había declarado transgénero en la escuela y que, durante meses, los profesores se habían referido a él con un nombre y pronombres diferentes, sin que Friday lo supiera. Se dedicó a luchar contra los proyectos de ley que, en su opinión, fomentaban la “ideología transgénero”. Dijo que va a presentar una demanda legal para intentar anular la nueva ley de California antes de que entre en vigencia este verano.

“Estamos dando a los niños una autonomía que nunca deberían tener”, afirmó Friday.

Según la nueva ley, los jóvenes podrán hablar con un terapeuta sobre la identidad de género sin el consentimiento de sus padres. Pero no podrán recibir tratamiento residencial, medicación o cirugía de afirmación de género sin el visto bueno de sus padres, como han sugerido algunos opositores.

Los menores tampoco pueden fugarse de casa o emanciparse al amparo de la ley, como también han sugerido los opositores.

“Esta ley no trata de los centros psiquiátricos de hospitalización. Esta ley no trata de cambiar las leyes de custodia de menores”, explicó , abogada y directora de salud del , que apoyó la AB 665.

“Esta ley trata de garantizar que cuando un joven necesite asesoramiento o un techo temporal para garantizar su propia seguridad y bienestar, queremos asegurarnos de que va a poder contar con una manera de tenerlo”, agregó.

La eliminación del requisito de consentimiento de los padres también podría ampliar el número de médicos de salud mental en California dispuestos a tratar a los jóvenes en Medi-Cal. Sin el consentimiento de los padres, bajo las viejas reglas, Medi-Cal no podía pagar a los médicos por el asesoramiento que ofrecen, ya sea en una práctica privada o en la oficina de un consejero de la escuela.

Esther Lau tuvo problemas de salud mental cuando era estudiante de secundaria en Fremont. A diferencia de Lu, tuvo el apoyo de sus padres, pero no podía encontrar un terapeuta que aceptara Medi-Cal. Al ser la única angloparlante nativa de su familia, tuvo que navegar sola la burocracia del sistema de salud.

Para ella, la AB 665 incentivará a los médicos a aceptar en sus consultas a más jóvenes de familias de bajos ingresos.

“Para la oposición, se trata sólo de tácticas políticas y de promover su agenda”, dijo Lau. “El proyecto de ley fue diseñado para ampliar el acceso a los jóvenes de Medi-Cal, y punto”.

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Lu wanted to get help, but her Medi-Cal plan wouldn’t cover therapy unless she had permission from a parent or guardian.

Her mother — a single parent and an immigrant from China — worked long hours to provide for Fiona, her brother, and her grandmother. Finding time to explain to her mom what therapy was, and why she needed it, felt like too much of an obstacle.

“I wouldn’t want her to have to sign all these forms and go to therapy with me,” said Lu, now 18 and a freshman at UCLA. “There’s a lot of rhetoric in immigrant cultures that having mental health concerns and getting treatment for that is a Western phenomenon.”

By her senior year of high school, Lu turned that experience into activism. She campaigned to change state policy to allow children 12 and older living in low-income households to get mental health counseling without their parents’ consent.

In October of last year, Gov. Gavin Newsom signed a expanding access to young patients covered by Medicaid, which is called Medi-Cal in California.

Teenagers with commercial insurance have had this privilege in the state for more than a decade. Yet parents of children who already had the ability to access care on their own were among the most vocal in opposing the expansion of that coverage by Medi-Cal.

Many parents seized on the bill to air grievances about how much control they believe the state has over their children, especially around gender identity and care.

One mother last spring calling school therapists “indoctrinators” and saying the bill allowed them to fill children’s heads with ideas about “transgenderism” without their parents knowing.

Those arguments were then repeated on social media and at protests held across California and in other parts of the country in late October.

At the California Capitol, several Republican lawmakers voted against the bill, AB 665. One of them was Assembly member James Gallagher of Sutter County.

“If my child is dealing with a mental health crisis, I want to know about it,” Gallagher said while discussing the bill on the Assembly floor last spring. “This misguided, and I think wrongful, trend in our policy now that is continuing to exclude parents from that equation and say they don’t need to be informed is wrong.”

State lawmaker for them or their families to qualify for Medi-Cal. Instead, they are offered a choice of , meaning children like Gallagher’s already have the privileges that he objected to in his speech.

To Lu, this was frustrating and hypocritical. She said she felt that the opponents lining up against AB 665 at legislative hearings were mostly middle-class parents trying to hijack the narrative.

“It’s inauthentic that they were advocating against a policy that won’t directly affect them,” Lu said. “They don’t realize that this is a policy that will affect hundreds of thousands of other families.”

Sponsors of AB 665 presented the bill as a commonsense update to an existing law. In 2010, California lawmakers had made it easier for young people to access outpatient mental health treatment and emergency shelters without their parents’ consent by that they be in immediate crisis.

But at the last minute, lawmakers in 2010 removed the expansion of coverage for teenagers by Medi-Cal for cost reasons. More than a decade later, AB 665 is meant to close the disparity between public and private insurance and level the playing field.

“This is about equity,” said Assembly member , a Los Angeles Democrat and the bill’s author.

The original law, which regulated private insurance plans, passed with bipartisan support and had in the legislature, she said. The law was signed by a Republican governor, Arnold Schwarzenegger.

“Since then, the extremes on both sides have gotten so extreme that we have a hard time actually talking about the need for mental health,” she said.

After Carrillo introduced the bill last year, her office faced death threats. She said the goal of the law is not to divide families but to encourage communication between parents and children through counseling.

More than 20 other states allow young people to consent to outpatient mental health treatment without their parents’ permission, including Colorado, Ohio, Tennessee, and Alabama, according to by researchers at Rowan University.

To opponents of the new law, like Erin Friday, a San Francisco Bay Area attorney, AB 665 is part of a broader campaign to take parents’ rights away in California, something she opposes regardless of what kind of health insurance children have.

Friday is a self-described lifelong Democrat. But then she discovered her teenager had come out as transgender at school and for months had been referred to by a different name and different pronouns by teachers, without Friday’s knowledge. She devoted herself to fighting bills that she saw as promoting “transgender ideology.” She said she plans to sue to try to overturn the new California law before it takes effect this summer.

“We’re giving children autonomy they should never have,” Friday said.

Under the new law, young people will be able to talk to a therapist about gender identity without their parents’ consent. But they cannot get residential treatment, medication, or gender-affirming surgery without their parents’ OK, as some opponents have suggested.

Nor can minors run away from home or emancipate themselves under the law, as opponents have also suggested.

“This law is not about inpatient psychiatric facilities. This law is not about changing child custody laws,” said , an attorney and the director of health of the , which supported AB 665.

“This law is about ensuring when a young person needs counseling or needs a temporary roof over their head to ensure their own safety and well-being, that we want to make sure they have a way to access it,” she said.

Removing the parental consent requirement could also expand the number of mental health clinicians in California willing to treat young people on Medi-Cal. Without parental consent, under the old rules, clinicians could not be paid by Medi-Cal for the counseling they provided, either in a private practice or a school counselor’s office.

Esther Lau struggled with mental health as a high school student in Fremont. Unlike Lu, she had her parents’ support, but she couldn’t find a therapist who accepted Medi-Cal. As the only native English speaker in her family, she had to navigate the health care bureaucracy on her own.

For her, AB 665 will give clinicians incentive to accept more young people from low-income households into their practices.

“For the opposition, it’s just about political tactics and furthering their agenda,” Lau said. “The bill was designed to expand access to Medi-Cal youth, period.”

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“The first shots he got, I probably cried more than he did,” said Remy Anthes, who was pushing her 6-month-old son, Dorian, back and forth in his stroller in Oakland, California.

“The look in her eyes, it’s hard to take,” said Jill Lovitt, recalling how her infant daughter Jenna reacted to some recent vaccines. “Like, ‘What are you letting them do to me? Why?’”

Some children remember the needle pain and quickly start to internalize the fear. That’s the fear Julia Cramer witnessed when her 3-year-old daughter, Maya, had to get blood drawn for an allergy test at age 2.

“After that, she had a fear of blue gloves,” Cramer said. “I went to the grocery store and she saw someone wearing blue gloves, stocking the vegetables, and she started freaking out and crying.”

Pain management research suggests that may be children’s biggest source of pain in the health care system. The problem isn’t confined to childhood vaccinations either. Studies looking at sources of pediatric pain have included children who are being treated for serious illness, have undergone heart surgeries or bone marrow transplants, or have landed in the .

“This is so bad that many children and many parents decide not to continue the treatment,” said , a specialist at the University of California-San Francisco’s , speaking at the conference in Los Angeles in November.

The distress of needle pain can follow children as they grow and interfere with important preventive care. It is estimated that have a fear of needles that began in childhood. Sixteen percent of adults because of a fear of needles.

Friedrichsdorf said it doesn’t have to be this bad. “This is not rocket science,” he said.

He outlined simple steps that clinicians and parents can follow:

• Apply an over-the-counter lidocaine, which is a numbing cream, 30 minutes before a shot.
• Breastfeed babies, or give them a pacifier dipped in sugar water, to comfort them while they’re getting a shot.
• Use distractions like teddy bears, pinwheels, or bubbles to divert attention away from the needle.
• Don’t pin kids down on an exam table. Parents should hold children in their laps instead.

At Children’s Minnesota, Friedrichsdorf practiced the “.” Now he and other health care providers are rolling out these new protocols for children at in San Francisco and Oakland. He’s calling it the “.”

If a child at UCSF needs to get poked for a blood draw, a vaccine, or an IV treatment, Friedrichsdorf promises, the clinicians will do everything possible to follow these pain management steps.

“Every child, every time,” he said.

It seems unlikely that the ouchless effort will make a dent in vaccine hesitancy and refusal driven by the anti-vaccine movement, since the beliefs that drive it are often rooted in conspiracies and deeply held. But that isn’t necessarily Friedrichsdorf’s goal. He hopes that making routine health care less painful can help sway parents who may be hesitant to get their children vaccinated because of how hard it is to see them in pain. In turn, children who grow into adults without a fear of needles might be more likely to get preventive care, including their yearly flu shot.

In general, the onus will likely be on parents to take a leading role in demanding these measures at medical centers, Friedrichsdorf said, because the tolerance and acceptance of children’s pain is so entrenched among clinicians.

, a palliative care specialist at Mount Sinai, agrees. She said this tolerance is a major problem, stemming from how doctors are usually trained.

“We are taught to see pain as an unfortunate, but inevitable side effect of good treatment,” Meier said. “We learn to repress that feeling of distress at the pain we are causing because otherwise we can’t do our jobs.”

During her medical training, Meier had to hold children down for procedures, which she described as torture for them and for her. It drove her out of pediatrics. She went into geriatrics instead and later helped lead to promote palliative care in medicine, which became an in the United States only in 2006.

Meier said she thinks the campaign to reduce needle pain and anxiety should be applied to everyone, not just to children.

“People with dementia have no idea why human beings are approaching them to stick needles in them,” she said. And the experience can be painful and distressing.

Friedrichsdorf’s techniques would likely work with dementia patients, too, she said. Numbing cream, distraction, something sweet in the mouth, and perhaps music from the patient’s youth that they remember and can sing along to.

“It’s worthy of study and it’s worthy of serious attention,” Meier said.

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Pero la mayoría de los seguros de salud privados aún no han determinado cómo, y si, la cubrirán, según de planes médicos.

La falta de orientación podría limitar el uso del medicamento, que es tanto novedoso —alivia los síntomas apuntando a la función hormonal y no a la serotonina cerebral como lo hacen los antidepresivos tradicionales— como costoso: $15,900 por un régimen de pastillas de 14 días.

Abogados, defensores y reguladores están observando de cerca cómo las aseguradoras diseñarán las normas para cubrirla.

Para su predecesora, una forma intravenosa del mismo medicamento llamada brexanolona que salió al mercado en 2019, muchas aseguradoras requirieron que las pacientes probaran otros medicamentos más baratos primero antes de aprobar su uso.

En los revisados por la Administración de Drogas y Alimentos (FDA) la droga mostró que ofrecía alivio en cuestión de días. Los antidepresivos tradicionales tardan de cuatro a seis semanas en hacer efecto.

“Tendremos que ver si las aseguradoras cubren este medicamento y qué requisitos de ‘intentar primero con otro’ establecen para la zuranolona”, dijo , psicoterapeuta y abogado que representa a pacientes.

La mayoría de los planes de salud aún no han emitido ninguna guía para la zuranolona, y defensores de la salud materna se preocupan de que los pocos que lo han hecho estén adoptando un enfoque restrictivo.

Algunas pólizas requieren que los pacientes prueben primero, y fracasen, con un antidepresivo estándar antes que la aseguradora pague por la zuranolona.

En otros casos, las directrices requieren que los psiquiatras lo receten, en lugar de los obstetras, lo que podría retrasar el tratamiento, ya que los gineco-obstetras  suelen ser los primeros proveedores médicos en detectar signos de depresión posparto.

Los defensores están más preocupados por la falta de orientación sobre la cobertura.

“Si no tienes una norma publicada, se tomarán decisiones que tal vez no sean justas y sean menos eficientes. La transparencia es realmente importante”, dijo Joy Burkhard, directora ejecutiva del , que encargó el estudio.

Con la brexanolona, que se vendía a $34,000 para un régimen de tratamiento de tres días, la aseguradora más grande de California, Kaiser Permanente, tenía criterios tan rigurosos para recetarla que expertos dijeron que la política equivalía a una denegación general para todos los pacientes, según de 2021.

Las directrices escritas de Kaiser Permanente requerían que los pacientes probaran y fallaran con cuatro medicamentos, y terapia electroconvulsiva, antes de ser elegibles para la brexanolona. Debido a que el medicamento estaba aprobado solo para los primeros seis meses postparto, y los ensayos de antidepresivos típicos toman de cuatro a seis semanas cada uno, el tiempo se agotaba antes que un paciente tuviera tiempo de probar la brexanolona.

Un análisis de NPR de una docena de otros planes de salud en ese momento mostró que la política de KP sobre la brexanolona era atípica. Algunos sí requerían que los pacientes fallaran con uno o dos medicamentos antes, pero KP fue el único que recomendó cuatro.

Miriam McDonald, quien desarrolló una grave depresión postparto e ideas suicidas después de dar a luz a finales de 2019, luchó contra Kaiser Permanente durante más de un año para encontrar un tratamiento efectivo.

Sus médicos la pusieron bajo una catarata de medicamentos que no funcionaron y que a menudo tenían efectos secundarios intolerables, dijo. Se negaron a recetarle brexanolona, el único medicamento aprobado por la FDA específicamente para la depresión postparto en ese momento.

“Ninguna mujer debería sufrir como yo después de tener un hijo”, dijo McDonald. “La política fue completamente injusta. Estaba en el purgatorio”.

Un mes después que NPR publicara su investigación, Kaiser Permanente revisó completamente sus criterios para recomendar que las mujeres probaran solo un medicamento antes de ser elegibles para la brexanolona.

Luego, en marzo de 2023, después que el Departamento de Trabajo federal lanzara una investigación contra la aseguradora —citando la investigación de NPR—, Kaiser revisó nuevamente sus directrices sobre brexanolona, eliminando todas las recomendaciones de intentar primero con otra droga, según documentos internos obtenidos recientemente por NPR. Los pacientes solo necesitan rechazar una prueba con otro medicamento.

“Desde que brexanolona fue aprobada por primera vez para su uso, más experiencia e investigación ha sumado información sobre su eficacia y seguridad”, dijo la aseguradora en un comunicado. “Kaiser Permanente se compromete a garantizar que brexanolona esté disponible cuando los médicos y los pacientes determinen que es un tratamiento apropiado”.

“Básicamente, Kaiser pasó de tener la política más restrictiva a la más sólida”, dijo Burkhard, del Centro de Política para la Salud Mental Materna. “Ahora es un estándar de oro para el resto de la industria”.

McDonald tiene la esperanza de que su disposición a hablar y las posteriores acciones regulatorias y cambios en las políticas para brexanolona lleven a Kaiser Permanente y a otros planes de salud a establecer normas favorables a los pacientes para la zuranolona.

“Esto evitará que otras mujeres tengan que pasar por un año de depresión para encontrar algo que funcione”, dijo.

Los médicos estaban emocionados cuando la FDA en agosto pasado, creyendo que en forma de pastilla, tomada una vez al día en casa durante dos semanas, sería más accesible para las mujeres en comparación con tres días de estadía en el hospital para la infusión intravenosa.

Muchos psiquiatras perinatales le dijeron a NPR que es imperativo tratar la depresión posparto lo antes posible para evitar efectos negativos, incluidos , ansiedad o depresión en el , o la muerte de la madre por suicidio, que representa hasta el .

Hasta ahora, solo una de las seis mayores aseguradoras privadas del país, Centene, ha establecido una política para la zuranolona. No está claro qué criterios establecerá Kaiser Permanente para la nueva pastilla. El programa de Medicaid de California, conocido como Medi-Cal, aún no ha establecido criterios de cobertura.

Las políticas de las aseguradoras para la zuranolona se escribirán en un momento en el que el entorno regulatorio en torno al tratamiento de la salud mental está cambiando.

El Departamento de Trabajo de Estados Unidos está tomando medidas enérgicas contra las violaciones del  de 2008, que requiere que las aseguradoras cubran los tratamientos psiquiátricos de la misma manera que los tratamientos físicos.

Ahora, las aseguradoras deben cumplir con requisitos de informes y auditorías más estrictos destinados a aumentar el acceso de los pacientes a la atención de salud mental, los defensores esperan que los planes de salud sean más cuidados al determinar las normas de uso.

En California, desde 2021, las aseguradoras también deben cumplir con una ley de paridad de salud mental estatal aún más amplia, que requiere que se utilicen criterios y directrices basadas en la clínica y reconocidas por expertos para tomar decisiones médicas.

La ley fue diseñada para limitar los rechazos arbitrarios o impulsados por el costo de los tratamientos de salud mental y ha sido celebrada como . Se espera que se publiquen muy esperadas para la ley esta primavera, que podrían ofrecer más orientación para las aseguradoras en California que establecen políticas para la zuranolona.

Mientras tanto, Burkhard dijo que las pacientes que sufren de depresión postparto no deberían dejar de preguntar a sus médicos sobre la zuranolona. Las aseguradoras aún pueden otorgar acceso al medicamento basándose en cada caso antes de formalizar sus criterios de cobertura.

“Los proveedores no deberían sentirse desalentados de recetar zuranolona”, dijo Burkhard.

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The lack of guidance could limit use of the drug, which is both novel — it targets hormone function to relieve symptoms instead of the brain’s serotonin system, as typical antidepressants do — and expensive, at $15,900 for the 14-day pill regimen.

Lawyers, advocates, and regulators are watching closely to see how insurance companies will shape policies for zuranolone because of how some handled its predecessor, an intravenous form of the same drug called brexanolone, which came on the market in 2019. Many insurers required patients to try other, cheaper medications first — known as the fail-first approach — before they could be approved for brexanolone, which was shown in reviewed by the FDA to provide relief within days. Typical antidepressants take four to six weeks to take effect.

“We’ll have to see if insurers cover this drug and what fail-first requirements they put in” for zuranolone, said , a licensed psychotherapist and an attorney who represents patients.

Most health plans have yet to issue any guidelines for zuranolone, and maternal health advocates worry that the few that have are taking a restrictive approach. Some policies require that patients first try and fail a standard antidepressant before the insurer will pay for zuranolone.

In other cases, guidelines require psychiatrists to prescribe it, rather than obstetricians, potentially delaying treatment since OB-GYN practitioners are usually the first medical providers to see signs of postpartum depression.

Advocates are most worried about the lack of coverage guidance.

“If you don’t have a published policy, there is going to be more variation in decision-making that isn’t fair and is less efficient. Transparency is really important,” said Joy Burkhard, executive director of the nonprofit , which commissioned the study.

With brexanolone, which was priced at $34,000 for the three-day infusion, California’s largest insurer, Kaiser Permanente, had such rigorous criteria for prescribing it that experts said the policy amounted to a blanket denial for all patients, according to an .

KP’s written guidelines required patients to try and fail four medications and electroconvulsive therapy before they would be eligible for brexanolone. Because the drug was approved only for up to six months postpartum, and trials of typical antidepressants take four to six weeks each, the clock would run out before a patient had time to try brexanolone.

An analysis by NPR of a dozen other health plans at the time showed Kaiser Permanente’s policy on brexanolone to be an outlier. Some did require that patients fail one or two other drugs first, but KP was the only one that recommended four.

Miriam McDonald, who developed severe postpartum depression and suicidal ideation after giving birth in late 2019, battled Kaiser Permanente for more than a year to find effective treatment. Her doctors put her on a merry-go-round of medications that didn’t work and often carried unbearable side effects, she said. Her doctors refused to prescribe brexanolone, the only FDA-approved medication specifically for postpartum depression at the time.

“No woman should suffer like I did after having a child,” McDonald said. “The policy was completely unfair. I was in purgatory.”

One month after NPR published its investigation, KP overhauled its criteria to recommend that women try just one medication before becoming eligible for brexanolone.

Then, in March 2023, after the federal Department of Labor launched an investigation into the insurer — citing NPR’s reporting — the insurer revised its brexanolone guidelines again, removing all fail-first recommendations, according to internal documents recently obtained by NPR. Patients need only decline a trial of another medication.

“Since brexanolone was first approved for use, more experience and research have added to information about its efficacy and safety,” the insurer said in a statement. “Kaiser Permanente is committed to ensuring brexanolone is available when physicians and patients determine it is an appropriate treatment.”

“Kaiser basically went from having the most restrictive policy to the most robust,” said Burkhard of the Policy Center for Maternal Mental Health. “It’s now a gold standard for the rest of the industry.”

McDonald is hopeful that her willingness to speak out and the subsequent regulatory actions and policy changes for brexanolone will lead Kaiser Permanente and other health plans to set patient-friendly policies for zuranolone.

“This will prevent other women from having to go through a year of depression to find something that works,” she said.

Clinicians were excited when the, believing the pill form, taken once a day at home over two weeks, will be more accessible to women compared with the three-day hospital stay for the IV infusion. Many perinatal psychiatrists told NPR it is imperative to treat postpartum depression as quickly as possible to avoid negative effects, including in the baby, anxiety or depression in the , or the death of the mother to suicide, which accounts for .

So far, only one of the country’s six largest private insurers, Centene, has set a policy for zuranolone. It is unclear what criteria KP will set for the new pill. California’s Medicaid program, known as Medi-Cal, has not yet established coverage criteria.

Insurers’ policies for zuranolone will be written at a time when the regulatory environment around mental health treatment is shifting. The U.S. Department of Labor is cracking down on violations of the of 2008, which requires insurers to cover psychiatric treatments the same as physical treatments.

Insurers must now comply with stricter reporting and auditing requirements intended to increase patient access to mental health care, which advocates hope will compel health plans to be more careful about the policies they write in the first place.

In California, insurers must also comply with an even broader state mental health parity law from 2021, which requires them to use clinically based, expert-recognized criteria and guidelines in making medical decisions. The law was designed to limit arbitrary or cost-driven denials for mental health treatments and has been for the rest of the country. Much-anticipated are expected to be released this spring and could offer further guidance for insurers in California setting policies for zuranolone.

In the meantime, Burkhard said, patients suffering from postpartum depression should not hold back from asking their doctors about zuranolone. Insurers can still grant access to the drug on a case-by-case basis before they formalize their coverage criteria.

“Providers shouldn’t be deterred from prescribing zuranolone,” Burkhard said. 

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For years, she refused help, insisting to all who offered, “I’m not sick,” until police arrested her for petty theft and public drunkenness. A judge gave her an ultimatum: jail or treatment. She chose treatment.

“I’m so thankful that they did that,” said Sweeney, now 52. “I needed that. I think there’s others out there that need it, too.”

If she hadn’t been compelled to get care, Sweeney said, she wouldn’t be alive today, back at work and reunited with her husband. It’s why she supports California’s new civil CARE Courts that will launch this fall in eight counties, including , , and Orange, followed by the rest of the state in 2024.

Under the new system, family members and first responders can ask county judges to order people with psychotic illness into treatment, even if they are not unhoused or haven’t committed a crime. A judge will then determine if a person meets criteria for the program and may oversee a care agreement or compel a treatment plan. That treatment plan could even include involuntary commitment.

The bill creating the program sailed through the state legislature with near-unanimous support last year amid growing frustration from voters over the state’s increasing number of homeless people, even as it drew vehement opposition from disability rights groups, who argued CARE Courts’ hallmark — compelling people who have done nothing wrong into mental health care — is a violation of civil rights.

That tension — between those who advocate for treatment being voluntary and those who say the status quo allows people to die in the streets “with their rights on” — is playing out all over the state of California. In Orange County, officials are threading a delicate needle: how to convince people to accept care without coercion, particularly when their illness causes them to believe they are not ill.

“We don’t want to punish people,” said Maria Hernandez, the presiding judge for Orange County Superior Court. “We want them to maintain their dignity.”

Orange County is expecting between 900 and 1,500 residents will be eligible for CARE Court in any given year, according to the county public defender’s office. Local lawyers, judges, and health officials have all aligned in designing their program with a distinct patient focus, endeavoring to make the process as benign and nonthreatening as possible.

Hernandez said that means modeling the new civil court after the county’s other collaborative courts, where judges often lose the black robe and come down off the bench to work with people, eye to eye.

One prototype, she said, is her , where, on a day in June, the mood was downright jovial. Defendants and their family members were chatting and laughing, munching on snacks laid out on a table in the back as three young men “graduated” from the diversion program.

“Judge Hernandez is so awesome,” said Abraham, 25, a graduate of the program, who asked to be identified only by his first name because he was charged with a felony that has since been expunged from his record. “I don’t even look at her as the judge. She’s just like a mom figure. She’s only trying to push you to be the better you.”

A minute later, Hernandez walked through the aisle of the courtroom and gave Abraham a hug.

Even if CARE Court is overseen by a judge like Hernandez, patient advocates object to the idea. Orlando Vera, who lives with bipolar disorder, said helping a vulnerable person heal from mental illness shouldn’t involve dragging them into a courtroom.

“It’s not a place you resolve your emotions. It is a very business-oriented environment. So I do feel that this is not the place for it,” Vera said, adding, “Can we stop it? I would say we can’t.”

After advocates the state Supreme Court to block the program on constitutional grounds, some started referring to gearing up for the rollout of CARE Court as “disaster preparedness,” equating it with a devastating earthquake or wildfire.

, a group Vera co-founded and runs, plans to install patient advocates at the courthouse to attend all CARE Court hearings.

“Our focus is how do we support those that are going through the system,” he said. “We need to be their voice.”

Orange County behavioral health director Veronica Kelley is sympathetic to advocates’ concerns. She said CARE Court is not the program she would have created to improve the state’s mental health system. But she serves at the will of the governor and other elected officials who control her budget.

“So we end up building the Winchester Mystery House,” she said, referring to the 100-year-old mansion in San Jose known for its mazelike layout. “It is a structure that was OK, but then it just started adding hallways to nowhere and basements that are on top of the building. That’s what our system looks like.”

Kelley is trying to shape the new court process into something its critics can accept. This is why she wanted Orange County to go first: “so we can help craft it into something that’s not another colossal waste of time and funds, and that we don’t destroy the people we’re trying to serve at the same time,” she told a roomful of patient advocates during a meeting of the state , held in Santa Ana.

This means social workers from her or the might visit people 20, 30, or 40 times to build trust, listen, and set goals.

Under the CARE legislation, county courts are allowed to fine public behavioral health agencies $1,000 a day if they can’t find a patient and enroll them in treatment by certain deadlines.

Kelley said her county’s judges have agreed to give her staff the time and extensions they need to do their jobs well. She also vowed that no one who declined services in her county would be institutionalized involuntarily, even though the new legislation allows it.

“If someone agrees to do something of their own accord, it is far more probable that there will be long-term success and long-term commitment to the services being provided,” she said.

Kelley pointed to the county’s success with another civil court process, established by , in which, for every person involved in court-ordered outpatient care, another 20 accepted treatment willingly.

She said the county has the same goal for CARE Court, with the focus on finding a treatment plan people accept voluntarily, before a judge has to order it.

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Then, a nurse at her high school’s health clinic in Oakland, California, explained the legal landscape of her new four-year home in Texas — where abortion is now fully banned.

Vital of protesters harassing women outside clinics in other states. She realized her newfound freedoms would come at the expense of another. That’s when she added one more task to her off-to-college checklist: get a long-acting, reliable form of birth control before leaving California.

“I don’t want to go out there and not know anything, not know where to go, because I’m in a new state. So I’m trying to be as prepared as I can before I leave,” she said.

The change is a huge culture shock for Vital and some of her classmates, who for the past four years at have had access to their own health clinic on campus.

The “” is a bright-purple building across from the football field and bleachers. The school’s bulldog mascot is painted near the door. On-site, students can get free, confidential birth control consults and screenings for sexually transmitted infections and be back at their desks for fourth-period math.

This summer, nurses at the Oakland clinic have formalized the “senior send-off” appointment, during which they counsel students about their legal rights and medical options before they leave for college.

After Roe v. Wade was overturned last year, clinic staffers realized students of color could be disproportionately affected by changes in state abortion laws. Many of them, like Vital, were choosing to go to historically Black colleges and universities in Southern states, where bans and limits on the procedure are more common.

“Many students here are just totally floored when I tell them that these laws are different in the states that they’re going to,” said Arin Kramer, a family nurse practitioner at the TechniClinic. Like many adults, “they can’t believe that they can’t get an abortion in this country.”

Kramer has been writing prescriptions for a year’s supply of contraceptive pills or patches, which students can pick up all at once.

Under California law, students can get contraception for free, without having to tell their parents or use a parent’s insurance plan. Students can pick up the prescription at the school clinic, or Kramer can call it in to a pharmacy near the student’s home.

During her own “senior send-off” appointment, Vital told nurse Kramer she was in the market for something even more reliable than pills.

“Because I’m very forgetful. Even if I set an alarm or write it down, it will still slip my mind,” Vital said.

She wanted a long-term contraceptive, like an IUD or a hormonal implant that would last for years and require no upkeep.

The and the have made these options their top recommendation for adolescents after research from both groups showed they were safe and highly effective at preventing teen pregnancy.

So at Oakland Tech and other school-based health clinics run by nonprofit , Kramer has trained other nurse practitioners how to insert these devices — so students can get them the same day they ask for them.

After reviewing the options, Vital decided she wanted . During their discussion, Kramer used clear, direct terms, even dropping in phrases students use themselves.

“Who are you talking to these days?” Kramer asked Vital, which is teen-speak for: Who are you having sex with?

“Same person,” Vital replied.

“You guys have been off and on, off and on,” Kramer said. “How do you feel going forward?”

“Well, now they’re on because he’s going to Texas, too,” Vital revealed with a smile. “He’s going with me.”

The clinic staff started preparing the exam room, so Vital could get the implant right away. Kramer turned on some calming music on her phone, washed her hands and had Vital lie down and raise her left arm over her head. Physician assistant Andrea Marquez came in to hold Vital’s other hand and offer words of encouragement.

“I’m going to count to three and then you’ll feel a little pinch,” Kramer said, before giving Vital a shot of numbing medication in her tricep area. Then she coached her through a series of deep breaths before inserting the tiny rod under the skin of her upper arm.

The whole procedure took less than 10 minutes, and Vital walked out with a birth control method that will last her up to five years. Now, she said, she can focus on her education and fully experience the new freedoms of college.

“I’m really excited for the growing up part of it,” she said.

Meanwhile, Kramer headed back to her office. She had a list of other patients to check up on, many headed to states that ban abortion. As they pack their books and bed linens for their new dorm rooms, she’s reminding them to also pack a year’s supply of contraception, too.

University-based health centers also are reconsidering their clinical protocols in the wake of the Dobbs v. Jackson Women’s Health Organization Supreme Court ruling that overturned Roe.

In 2020, only 35% of colleges offered on-site IUD insertion and 43% offered contraceptive implant insertion, according by the .

That group college clinics do routine pregnancy screenings to identify pregnancies as early as possible, to give students more time to consider their options, and to have legal counsel on call to advise clinicians on allowable practices.

Attorneys might even help advise university health centers about how to have conversations with patients, especially in states like Texas, where local law forbids clinicians from “aiding and abetting” patients who seek abortion care. These new threats — of prosecution or pulled funding — have complicated clinicians’ communication with their collegiate patients.

“So I’m going to be vague with my wording, purposefully,” said Yolanda Nicholson, director of clinical education at the North Carolina Agricultural and Technical State University health center, and chair for of the American College Health Association.

Nicholson thinks the concept of the senior send-off appointment in the student’s home state is a great one, given that college health centers in Texas and throughout the South have had to adjust their educational approach with students to be more general and “maybe not as specific or targeted as we would have previously done,” to stay aligned with local laws.

Out-of-state students are often shocked to discover they don’t have access to the same services as they do at home, she said.

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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, 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 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, on the city’s streets. One resident in a snowstorm to a stillborn infant. Methamphetamine, cheaper and more potent than it used to be, is of overdose and psychosis.

In Oregon, some politicians, including Portland Mayor Ted Wheeler, have 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 of , 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.

people live in California, and though only about a quarter to 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 , 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 — 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 , 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 .

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 . 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 , a sponsor of the conservatorship bill, . “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 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 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 in January to try to of CARE Courts.

These advocates are particularly concerned that people of color, specifically Black residents, who are overrepresented in the homeless population and , 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 , 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 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 .

Cabrera’s group also questions the premise that forced treatment works, and there is indeed 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 .

“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 for the construction of small, neighborhood-oriented residences for people with mental illness.

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

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Estos buscan pistas sobre lo que ha contribuido a estas muertes —recetas que nunca se recogieron, faltar a citas médicas postnatales, señales de alerta que los médicos pasaron por alto—, para averiguar cuántas podrían haberse evitado y cómo.

Los comités trabajan en 36 estados, y en , publicada en septiembre por los Centros para el Control y Prevención de Enfermedades (CDC), un sorprendente 84% de las muertes relacionadas con el embarazo se consideraron prevenibles.

Lo que resulta aún más alarmante para enfermeras-detectives como es que el 53% de las muertes se produjeron mucho después de que las mujeres fueran dadas de alta del hospital, entre siete días y un año después del parto.

“Estamos muy centrados en el bebé”, afirma. “Una vez que el bebé está aquí, es casi como si la madre fuera descartada… Y en lo que realmente tenemos que pensar es en ese cuarto trimestre, ese tiempo después del nacimiento del bebé”.

Las condiciones de salud mental fueron la principal causa subyacente de muertes maternas entre 2017 y 2019. Las blancas no hispanas y las hispanas fueron las más propensas a morir por suicidio o sobredosis de drogas, mientras que los problemas cardíacos fueron la principal causa de muerte para las mujeres negras no hispanas.

Ambas circunstancias ocurren desproporcionadamente más tarde en el período posparto, según el informe de los CDC.

Los datos revelan , desde los obstetras que no están adiestrados (o bien pagados) para buscar signos de problemas mentales o de adicción, hasta las pólizas que despojan a las mujeres de la cobertura médica poco después de dar a luz.

El principal problema es que el típico control postnatal de seis semanas es demasiado tarde, según Sheffield-Abdullah. En los datos de Carolina del Norte, las nuevas madres que murieron más tarde no acudieron a esta cita porque tenían que volver al trabajo o tenían otros niños pequeños, agregó.

“Tenemos que estar realmente en contacto mientras están en el hospital”, dijo Sheffield-Abdullah, y luego asegurarnos de que las pacientes reciban la atención de seguimiento adecuada “una o dos semanas después del parto”.

Otra de las recomendaciones de los CDC es más pruebas de detección de depresión y ansiedad posparto, durante todo el año posterior al parto, así como una mejor coordinación de la atención entre los servicios médicos y sociales, según David Goodman, que dirige el equipo de prevención de mortalidad materna de la , que publicó el informe.

Una crisis frecuente es que la adicción de uno de los padres se agrava tanto que los servicios de protección infantil se llevan al bebé, lo que precipita una sobredosis accidental o intencionada de la madre. Tener acceso al tratamiento y asegurarse de que las visitas a los niños se produzcan con regularidad podría ser la clave para prevenir estas muertes, apuntó Goodman.

El cambio político más importante ha sido la ampliación de la cobertura sanitaria gratuita a través de Medicaid, indicó. Hasta hace poco, la cobertura de Medicaid relacionada con el embarazo solía expirar dos meses después del parto, lo que obligaba a las mujeres a dejar de tomar medicamentos o de acudir a un terapeuta o a un médico porque no podían pagar el costo sin seguro médico.

Ahora, la cobertura de Medicaid hasta un año completo después del parto, en parte como respuesta a los primeros trabajos de los comités de revisión de la mortalidad materna.

“Si esto no es una llamada a la acción, no sé qué es”, señaló , directora ejecutiva de la Maternal Mental Health Leadership Alliance, una organización sin fines de lucro centrada en la política nacional. “Hace tiempo que sabemos que los problemas de salud mental son la complicación más común del embarazo y el parto. Solo que no hemos tenido la voluntad de hacer algo al respecto”.

El último estudio de los CDC de septiembre analizó 1,018 muertes en 36 estados, casi el doble de los 14 estados que participaron en el informe anterior. Los CDC están dando aún más fondos para las revisiones de la mortalidad materna, dijo Goodman, con la esperanza de captar datos más completos de más estados en el futuro.

El aumento de la concientización y la atención sobre la mortalidad materna les ha dado esperanza a activistas y médicos, especialmente por : las mujeres negras tienen tres veces más probabilidades de morir por complicaciones relacionadas con el embarazo que las blancas.

Pero muchos de estos mismos partidarios de una mejor atención materna dicen estar consternados por la reciente decisión del Tribunal Supremo de Estados Unidos de erradicar el derecho federal al aborto; las restricciones en torno a la atención de la salud reproductiva, dicen, erosionarán los avances.

Desde que estados como Texas empezaron a prohibir los abortos en etapas tempranas del embarazo y a hacer menos excepciones para aquellos casos en los que la salud de la embarazada está en peligro, a algunas mujeres .

Los estados también están prohibiendo los abortos —incluso en casos de violación o incesto— de complicaciones o muerte por llevar un embarazo a término.

“Cada vez más el mensaje es que ‘no eres dueña de tu cuerpo'”, dijo , profesora adjunta de redacción, política y gestión sanitaria en la Universidad George Washington.

Según Barlow, esto no hará más que agravar los problemas de salud mental que experimentan las mujeres en torno al embarazo, especialmente las mujeres negras, que también se enfrentan a la larga historia intergeneracional de la esclavitud y el embarazo forzado. Sospecha que las cifras de mortalidad materna empeorarán antes de mejorar, debido a la interrelación entre la política y la psicología.

“Hasta que no abordemos lo que está ocurriendo políticamente”, dijo, “no vamos a poder ayudar a lo que está ocurriendo psicológicamente”.

Esta historia es parte de una alianza que incluye a ,Ìý,Ìýy KHN.

Ñî¹óåú´«Ã½Ò•îl 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 .

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