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“Este es el último pañal que me queda”: la ansiedad de ser padres en la pobreza

Fri, 10/22/2021 - 12:30pm

Para los padres que viven en la pobreza, la “matemática del pañal” es un cálculo diario, apremiante y angustiante, con el que están familiarizados.

En los Estados Unidos, los bebés usan de seis a 10 pañales desechables al día, a un costo promedio de $70 a $80 al mes. Los pañales de marca con alta absorción se venden hasta por medio dólar cada uno, un gasto de más de $120 al mes.

Una de cada tres familias estadounidenses no puede pagar por suficientes pañales para mantener a sus bebés y niños pequeños limpios, secos y saludables, según la National Diaper Bank Network. Para muchos padres, eso lleva a elecciones desgarradoras: ¿pañales, comida o renta?

La pandemia de covid-19 ha agravado la situación, engrosando las listas de desempleados y causando interrupciones en la cadena de suministro que han generado precios más altos para una multitud de productos, incluidos los pañales.

Los bancos de pañales, programas financiados por la comunidad que ofrecen pañales gratis a familias de bajos ingresos, distribuyeron un 86% más de pañales en promedio en 2020, comparado con 2019, según la red nacional. En algunos lugares, la distribución aumentó hasta en un 800%.

Sin embargo, ningún programa federal ayuda a los padres a pagar por este producto esencial de la niñez. El programa de asistencia alimentaria del gobierno no cubre pañales, ni la mayoría de los programas de ayuda pública a nivel estatal.

California es el único estado que financia directamente los pañales para las familias, pero el apoyo es limitado. CalWORKS, un programa de asistencia financiera para familias con niños, proporciona $30 al mes para ayudar a las familias a pagar por los pañales para los menores de 3 años.

También se pueden producir cambios en las políticas federales: los legisladores demócratas están presionando para incluir $200 millones para la distribución de pañales en el paquete masivo de reconciliación presupuestaria.

Sin los recursos adecuados, los padres de bajos ingresos luchan por encontrar formas de aprovechar al máximo cada pañal. Esta tarea estresante es el tema de un artículo reciente en American Sociological Review de Jennifer Randles, profesora de sociología en la Universidad Estatal de California en Fresno. En 2018, Randles realizó entrevistas telefónicas con 70 madres en California durante nueve meses. También trató de reclutar padres, pero solo respondieron dos hombres.

Randles habló con Jenny Gold de KHN sobre cómo el costo de los pañales pesa en las mamás de bajos ingresos y la “maternidad creativa” que muchas mujeres adoptan para proteger a sus hijos de los daños de la pobreza.

¿Qué rol juegan los pañales en las ansiedades cotidianas de las madres de bajos ingresos?

En mi muestra, la mitad de las madres me dijeron que se preocupaban más por los pañales que por la comida o la vivienda.

Comencé a preguntarles a las madres: “¿Pueden decirme cuántos pañales tienen a mano en este momento?” Casi todas me dijeron con precisión exacta cuántos tenían: cinco, siete o 12. Y sabían exactamente cuánto duraría esa cantidad, según la frecuencia con la que sus hijos defecaban y orinaban, si su hijo estaba enfermo, o si tenía una dermatitis del pañal en ese momento.

Llevar un registro tan cuidadoso de los suministros de pañales es todo un trabajo emocional y cognitivo.

Estaban preocupadas y pensando: “Está bien, me he quedado casi con mi último pañal. ¿Qué hago ahora? ¿Voy a buscar algunas latas [para vender]? ¿Voy a vender algunas cosas en mi casa? ¿Quién en mi red social podría tener algo de dinero extra en este momento?”. Hablé con mamás que venden plasma sanguíneo solo para comprar pañales a sus bebés.

¿Qué estrategias para afrontar esto le llamaron la atención?

Los que estudiamos los pañales a menudo los llamamos estrategias para estirar los pañales. Una le dejaba puesto un pañal a su niño un poco más de lo habitual, hasta que se llenara por completo. Algunas madres se dieron cuenta de que si compraban un pañal [más caro] que aguantaba más y goteaba menos, podían dejarlo puesto por más tiempo.

También hacían cosas como dejar que el bebé se quedara sin pañal, especialmente cuando estaban en la casa y sentían que no serían juzgadas por esto. Y utilizaban todos los bienes domésticos que puedas imaginar para hacer pañales improvisados: telas, sábanas y fundas de almohada. Están usando cosas que son desechables como toallas de papel con cinta adhesiva. Están haciendo pañales con sus propios suministros para la menstruación o suministros para la incontinencia de adultos cuando pueden obtener una muestra gratis.

Una de las preguntas que me hacen a menudo es: “¿Por qué no usan simplemente tela?” Muchas de las madres con las que hablé habían probado los pañales de tela y descubrieron que eran muy costosos y la mano de obra, prohibitiva. Si pagas por un juego completo de pañales de tela para comenzar, estamos hablando de entre $500 y $1,000. Y estas mamás nunca tuvieron tanto dinero. La mayoría no tenían lavadoras ni secadoras en casa. Algunas ni siquiera tenían casa o acceso consistente a agua, y es ilegal en muchas lavanderías comunitarias y públicas lavar pañales usados. Por lo tanto, las mismas condiciones que evitarían que las mamás puedan pagar fácilmente pañales desechables son las mismas condiciones que les impiden usar telas.

Descubrió que el concepto de muchas mujeres de ser “una buena madre” está relacionado con el cambio de pañales. ¿Por qué es eso?

Los pañales y el manejo de los pañales eran fundamentales para su identidad como buenas mamás. La mayoría de las madres de mi muestra se privaban de su propia comida. No estaban pagando una factura de teléfono celular o comprando sus propios medicamentos o sus propios suministros menstruales, como una forma de ahorrar dinero para pañales.

Hablé con muchas mamás que dijeron que cuando su bebé tiene hambre, eso es horrible. Obviamente, haces todo lo posible para evitarlo. Pero hay algo en un pañal que cubre esta parte vulnerable del cuerpo de un bebé muy pequeño, esta piel tan delicada. Y poder hacer algo para satisfacer esta necesidad humana que todos tenemos, y mantener la dignidad y la limpieza.

Muchas de las mamás habían pasado por el sistema de asistencia social, por lo que viven con este miedo constante [de perder a sus hijos]. Esto es especialmente cierto entre las madres de color, que son mucho más propensas a ser parte del sistema de bienestar infantil. Las personas no necesariamente pueden ver cuándo un bebé tiene hambre. Pero la gente puede ver un pañal en mal estado. Esa será una de las cosas que la etiquetará como mala madre.

¿Su trabajo con los pañales se vio influenciado por su experiencia como madre?

Cuando estaba haciendo estas entrevistas, mi hija tenía alrededor de 2 o 3 años. Así que todavía estaba en pañales. Cuando mi hija orinaba durante un cambio de pañal, pensaba: “Oh, puedo tirar ese. Déjame conseguir otro limpio”. Esa es una elección realmente fácil. Para mi. Pero es una crisis para las madres que entrevisté. Muchas me dijeron que tienen un ataque de ansiedad con cada cambio de pañal.

¿Ve una solución política clara para el estrés relacionado con los pañales?

Lo que resulta un tanto irónico es la cantidad de trabajo físico, emocional y cognitivo que implica la gestión de algo que la sociedad y los legisladores ni siquiera reconocen. Los pañales todavía no se reconocen realmente como una necesidad básica, como lo demuestra el hecho de que todavía están sujetos a impuestos en 35 estados.

Creo que lo que está haciendo California es un excelente comienzo. Y creo que los bancos de pañales son un tipo de organización comunitaria fabulosa, que está satisfaciendo una gran necesidad que no está siendo cubierta por las políticas de la red de seguridad. Entonces, apoyo público a los bancos de pañales.

La ayuda directa en efectivo que forma parte de la red de seguridad social prácticamente se ha desmantelado en los últimos 25 años. California es bastante generosa. Pero hay algunos estados donde solo el costo de los pañales usaría casi la mitad del beneficio estatal promedio de TANF [Asistencia Temporal para Familias Necesitadas] para una familia de tres. Creo que realmente tenemos que abordar el hecho de que el valor de la ayuda en efectivo compra mucho menos de lo que solía hacerlo.

Su trabajo sobre el matrimonio y la familia es fascinante e inusual. ¿Hay una pregunta central detrás de su investigación?

El hilo conductor es: ¿Cómo apoyan nuestras políticas de red de seguridad los objetivos de crianza de los hijos de las familias de bajos ingresos? ¿Son igualitarias las condiciones de la crianza de los hijos? Lo considero un problema de justicia reproductiva. La capacidad de tener un hijo o no tener un hijo, y luego criar a ese hijo en condiciones en las que se satisfagan las necesidades básicas del niño.

Nos gusta decir que somos aptos para tener niños y familias. El tema de los pañales es solo uno de muchos, muchos problemas en los que realmente no ponemos nuestro dinero o nuestras políticas en lo que decimos que haremos, en términos de apoyo a las familias y apoyo a los niños. Creo que mi trabajo está tratando de hacer que la gente piense de manera más colectiva acerca de tener una responsabilidad social con todas las familias y con el otro. Ningún país, pero especialmente el país más rico del planeta, debería tener 1 de cada 3 niños muy pequeños sin satisfacer una de sus necesidades básicas.

Entrevisté a un padre que estaba preso porque escribió un cheque sin fondos. Y como me lo describió, tenía una cierta cantidad de dinero y necesitaban tanto pañales como leche para el bebé. Y nunca lo olvidaré, dijo, “No tomé una buena decisión, pero tomé la correcta”.

Estos no son zapatos elegantes. No se trata de ropa de marca. Este era un padre que necesitaba leche y pañales. No creo que haya nada más básico que eso.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Categories: National News Content

Confronting Ageism in Health Care: A Conversation for Patients, Caregivers and Clinicians

Fri, 10/22/2021 - 11:14am

Can’t see the video player? View the video here.

What does ageism in health care look like? It can be a thoughtless quip that makes an older person feel diminished. Or an assumption that patients are unable to follow a conversation or make their own decisions. Maybe it occurs when a concern is voiced, then discounted or dismissed.

Ageism is reflected in care strategies that ignore a patient’s values and ideas about what constitutes a productive life. Too often, attitudes such as “these patients are old and near the end anyway” or “there’s not much we can do to help them” prevail.

Ageism is not new, but the covid pandemic brought it shockingly into view. In its early days, the virus was shrugged off as something of concern mostly to older people, with some arguing they were expendable if the alternative was shutting down the economy. In the grave months that followed, many who died in nursing care were dehumanized in news reports that showed body bags piled outside facilities. To date, about 80% of those who have died of covid-19 have been older adults, including nearly 140,000 nursing home residents — a population beset by understaffing, inadequate infection control and neglect.

KHN and The John A. Hartford Foundation held a web event Thursday. Judith Graham, KHN’s Navigating Aging columnist, hosted the discussion. She was joined by: 

  • Dr. Louise Aronson, a geriatrician, professor of medicine at the University of California-San Francisco and author of “Elderhood.” 
  • Dr. Michael Wasserman, a geriatrician, advocate for vulnerable older adults during the pandemic and leader of the public policy committee of the California Association of Long Term Care Medicine.
  • Dr. Javette Orgain, a family physician and medical director for Longevity Health Plan of Illinois, which serves nursing home residents; former president of the National Medical Association, which represents African American physicians and their patients; and former assistant dean of the University of Illinois-Chicago’s Urban Health Program. 
  • Dr. Rebecca Elon, a geriatrician and caregiver for her mother, who has dementia, and husband, who died earlier this year. 
  • Jess Maurer, a lawyer and executive director of the Maine Council on Aging, which promotes an anti-ageism pledge.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Categories: National News Content

‘No Mercy’ Bonus Episodes: More From Fort Scott, Kansas

Fri, 10/22/2021 - 5:00am
Searching for the Nuns Who Ghosted Fort Scott

Host Sarah Jane Tribble sets out on a mission to learn more about the Sisters of Mercy, the nuns who founded Fort Scott’s Mercy Hospital and were once prominent leaders of the community. Tribble’s first glimpse into their lives takes her to an old convent. To learn more about the founding of Fort Scott’s hospital, listen to Episode Four.

Can’t see the audio player? Click here to listen.

Click here to read the episode transcript.

How’s Josh?

Before Fort Scott’s hospital shut down, Josh was a teenager coping with his aging grandparents and the emotional burden of his mother’s opioid death. The family’s troubles worsened after the hospital closed. Tribble gives Josh a call to find out his next steps. If you want to hear more of Josh’s story, we tell it in Episode Six.

Can’t see the audio player? Click here to listen.

Click here to read the episode transcript.

“Where It Hurts” is a podcast collaboration between KHN and St. Louis Public Radio. Season One extends the storytelling from Sarah Jane Tribble’s award-winning series, “No Mercy.”

Subscribe to Where It Hurts on Apple PodcastsStitcherGoogleSpotifyPocket Casts or wherever you listen to podcasts.

To hear all KHN podcasts, click here.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Categories: National News Content

‘Down to My Last Diaper’: The Anxiety of Parenting in Poverty

Fri, 10/22/2021 - 5:00am

For parents living in poverty, “diaper math” is a familiar and distressingly pressing daily calculation. Babies in the U.S. go through six to 10 disposable diapers a day, at an average cost of $70 to $80 a month. Name-brand diapers with high-end absorption sell for as much as a half a dollar each, and can result in upwards of $120 a month in expenses.

One in every three American families cannot afford enough diapers to keep their infants and toddlers clean, dry and healthy, according to the National Diaper Bank Network. For many parents, that leads to wrenching choices: diapers, food or rent?

The covid-19 pandemic has exacerbated the situation, both by expanding unemployment rolls and by causing supply chain disruptions that have triggered higher prices for a multitude of products, including diapers. Diaper banks — community-funded programs that offer free diapers to low-income families — distributed 86% more diapers on average in 2020 than in 2019, according to the National Diaper Bank Network. In some locations, distribution increased by as much as 800%.

Yet no federal program helps parents pay for this childhood essential. The government’s food assistance program does not cover diapers, nor do most state-level public aid programs.

California is the only state to directly fund diapers for families, but support is limited. CalWORKS, a financial assistance program for families with children, provides $30 a month to help families pay for diapers for kids under age 3. Federal policy shifts also may be in the works: Democratic lawmakers are pushing to include $200 million for diaper distribution in the massive budget reconciliation package.

Without adequate resources, low-income parents are left scrambling for ways to get the most use out of each diaper. This stressful undertaking is the subject of a recent article in American Sociological Review by Jennifer Randles, a professor of sociology at California State University-Fresno. In 2018, Randles conducted phone interviews with 70 mothers in California over nine months. She tried to recruit fathers as well, but only two men responded.

Randles spoke with KHN’s Jenny Gold about how the cost of diapers weighs on low-income moms, and the “inventive mothering” many low-income women adopt to shield their children from the harms of poverty. The conversation has been edited for length and clarity.

Q: How do diapers play into day-to-day anxieties for low-income mothers?

In my sample, half of the mothers told me that they worried more about diapers than they worried about food or housing.

I started to ask mothers, “Can you tell me how many diapers you have on hand right now?” Almost every one told me with exact specificity how many they had — five or seven or 12. And they knew exactly how long that number of diapers would last, based on how often their children defecated and urinated, if their kid was sick, if they had a diaper rash at the time. So just all the emotional and cognitive labor that goes into keeping such careful track of diaper supplies.

They were worrying and figuring out, “OK, I’m down to almost my last diaper. What do I do now? Do I go find some cans [to sell]? Do I go sell some things in my house? Who in my social network might have some extra cash right now?” I talked to moms who sell blood plasma just to get their infants diapers.

Q: What coping strategies stood out to you?

Those of us who study diapers often call them diaper-stretching strategies. One was leaving on a diaper a little bit longer than someone might otherwise leave it on and letting it get completely full. Some mothers figured out if they bought a [more expensive] diaper that held more and leaked less, they could leave the diaper on longer.

They would also do things like letting the baby go diaperless, especially when they were at home and felt like they wouldn’t be judged for letting their baby go without a diaper. And they used every household good you can imagine to make makeshift diapers. Mothers are using cloth, sheets and pillowcases. They’re using things that are disposable like paper towels with duct tape. They’re making diapers out their own period supplies or adult incontinence supplies when they can get a sample.

One of the questions I often get is, “Why don’t they just use cloth?” A lot of the mothers that I spoke with had tried cloth diapers and they found that they were very cost- and labor-prohibitive. If you pay for a full startup set of cloth diapers, you’re looking at anywhere from $500 to $1,000. And these moms never had that much money. Most of them didn’t have in-home washers and dryers. Some of them didn’t even have homes or consistent access to water, and it’s illegal in a lot of laundromats and public laundry facilities to wash your old diapers. So the same conditions that would prevent moms from being able to readily afford disposable diapers are the same conditions that keep them from being able to use cloth.

Q: You found that many women’s concept of being a good mother is wrapped up in diapering. Why is that?

Diapers and managing diapers was so fundamental to their identity as good moms. Most of the mothers in my sample went without their own food. They weren’t paying a cellphone bill or buying their own medicine or their own menstrual supplies, as a way of saving diaper money.

I talked to a lot of moms who said, when your baby is hungry, that’s horrible. Obviously, you do everything to prevent that. But there’s something about a diaper that covers this vulnerable part of a very young baby’s body, this very delicate skin. And being able to do something to meet this human need that we all have, and to maintain dignity and cleanliness.

A lot of the moms had been through the welfare system, and so they’re living in this constant fear [of losing their children]. This is especially true among mothers of color, who are much more likely to get wrapped up in the child welfare system. People can’t necessarily see when your baby’s hungry. But people can see a saggy diaper. That’s going to be one of the things that tags you as a bad mom.

Q: Was your work on diapers influenced by your experience as a parent?

When I was doing these interviews, my daughter was about 2 or 3. So still in diapers. When my daughter peed during a diaper change, I thought, “Oh, I can just toss that one. Here, let me get another clean one.” That’s a really easy choice. For me. That’s a crisis for the mothers I interviewed. Many of them told me they have an anxiety attack with every diaper change.

Q: Do you see a clear policy solution to diaper stress?

What’s kind of ironic is how much physical, emotional and cognitive labor goes into managing something that society and lawmakers don’t even recognize. Diapers are still not really recognized as a basic need, as evidenced by the fact that they’re still taxed in 35 states.

I think what California is doing is an excellent start. And I think diaper banks are a fabulous type of community-based organization that are filling a huge need that is not being filled by safety net policies. So, public support for diaper banks.

The direct cash aid part of the social safety net has been all but dismantled in the last 25 years. California is pretty generous. But there are some states where just the cost of diapers alone would use almost half of the average state TANF [Temporary Assistance for Needy Families] benefit for a family of three. I think we really do have to address the fact that the value of cash aid buys so much less than it used to.

Q: Your body of work on marriage and families is fascinating and unusual. Is there a single animating question behind your research?

The common thread is: How do our safety net policies support low-income families’ parenting goals? And do they equalize the conditions of parenting? I think of it as a reproductive justice issue. The ability to have a child or to not have a child, and then to parent that child in conditions where the child’s basic needs are met.

We like to say that we’re child and family friendly. The diaper issue is just one of many, many issues where we don’t really put our money or our policies where our mouth is, in terms of supporting families and supporting children. I think my work is trying to get people to think more collectively about having a social responsibility to all families and to each other. No country, but especially the richest country on the planet, should have 1 in 3 very young children not having one of their basic needs met.

I interviewed one dad who was incarcerated because he wrote a bad check. And as he described it to me, he had a certain amount of money, and they needed both diapers and milk for the baby. And I’ll never forget, he said, “I didn’t make a good choice, but I made the right one.”

These are not fancy shoes. These are not name-brand clothes. This was a dad needing both milk and diapers. I don’t think it gets much more basic than that.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Montana Tribes Want to Stop Jailing People for Suicide Attempts but Lack a Safer Alternative

Fri, 10/22/2021 - 5:00am

POPLAR, Mont. — When Maria Vega was a senior in high school in 2015, she found the body of one of her closest friends, who had died by suicide. A few days later, devastated by the loss, Vega tried to take her own life.

After the attempt failed, she was arrested and taken to juvenile detention in Poplar, a remote town on the Missouri River a short drive from the North Dakota oil fields. She was put in a cell and kept under observation for several days until a mental health specialist was available to see her. Her only interaction was with the woman who brought food to her cell.

“I remember asking her if I could have a hug and she told me, ‘I’m sorry, I can’t do that,’” Vega recalled. “That was honestly one of the hardest things I ever went through in my life. I felt like I was being punished for being sad.”

Jailing people because of a mental health issue is illegal in Montana and every other state except New Hampshire. But Vega is a member of the Fort Peck Assiniboine and Sioux Tribes, a sovereign nation with its own laws. An 11-year-old tribal policy allows law enforcement to put members who threaten or attempt suicide in jail or juvenile detention to prevent another attempt.

Fort Peck’s tribal leaders say they approved the policy out of necessity because there were no mental health facilities equipped for short-term housing of people in mental crisis.

The covid pandemic has only exacerbated the crisis. In 2020, the tribes filed a record 62 aggravated disorderly conduct charges, the criminal charge they created in 2010 to allow law enforcement to book people they deemed a risk to themselves or others.

Stacie FourStar, chief judge of the Fort Peck Tribal Court, said this year has been even worse: The tribe is filing two to four charges per week. The policy has swept up people — particularly adolescents — with no criminal records and no experience with the criminal justice system, she said.

The judge fears it creates a perverse incentive not to call 911 or reach out for help when depression sets in. “They don’t want to go to jail,” FourStar said. “They just want somebody to talk to.”

Tribal officials and various mental health advocates have been trying to find an alternative for nearly a decade. But the reservation is still badly lacking in both secure psychiatric facilities and qualified mental health workers. Despite funding available for new positions, recruitment efforts have failed and there is still no viable alternative to keep people safe.

“Their hands are tied,” FourStar said, noting that if “personnel and facilities aren’t available, we’ll be putting people in an unsafe situation.”

Having experienced imprisonment herself as a teen, Vega is now part of a team of tribal members, state educators and policy experts looking for alternative solutions.

The group’s ideas include ensuring that a mental health specialist is the first point of contact for a person in crisis and setting up safe houses, said Harvard University political scientist Daniel Carpenter, the project’s leader.

In May, the group presented a plan to the Fort Peck Tribal Council, which has yet to act on its recommendations. A spokesperson for the Fort Peck Tribes said the tribes are looking into the policy but declined to comment further.

Yet tribal leaders say that unless they can attract mental health workers to remote northeastern Montana, the jailings will likely continue. “We can propose all we want,” said Jestin Dupree, a tribal legislator and chairman of the law and justice committee. “We’re not getting the doctors, the qualified people.”

The Fort Peck reservation, a windswept cluster of small towns surrounded by 2 million acres of rolling farmland, has a suicide rate that in some years has topped six times the national average. Native American adolescents are twice as likely to die by suicide as their white peers.

The 2010 policy that put Vega in jail followed a cluster of more than 150 suicide attempts and the deaths of at least six teenagers. Overwhelmed by the crisis, Fort Peck’s tribal government created the “aggravated disorderly conduct” charge.

“It came from desperation,” said FourStar, who was chief tribal prosecutor at the time. “Families weren’t able to handle the needs of their loved ones and they didn’t want them to hurt themselves.”

People charged with aggravated disorderly conduct are held until they can undergo a mental health evaluation and attend a court hearing, where they may receive a court-ordered treatment plan. If they comply with the plans, the charge is dropped. They usually don’t end up with a public criminal record, but the court system can still track them.

Nontribal members are never put in jail, because the tribe lacks jurisdictional authority over them. Instead, a police officer ends up sitting with them in the hospital — sometimes for days — until they can be evaluated.

Not every suicide threat or attempt ends in an aggravated disorderly conduct charge. Ideally, a person in crisis is immediately evaluated by a mental health professional at the Indian Health Service or a telemedicine provider who can refer them to emergency care, if needed.

“Even though there’s difficulties in trying to get care for them, we still persevere,” said Sylvia Longknife, an IHS mental health specialist in Poplar. Longknife is IHS’ only mental health worker on the Fort Peck reservation since two other providers quit this year, meaning she can’t always immediately see somebody in crisis.

Longknife said she sees between two and five emergency cases a week. If the situation is deemed an emergency, the patient is referred to a facility four hours away in Billings. IHS doesn’t have its own transportation, so it either asks family members to drive the patient or requests transportation funds from the tribe.

If a suicide attempt occurs on a weekend, after hours or when a mental health worker is unavailable, police officers who respond may end up taking the person to a hospital for medical treatment, if necessary, and then to jail.

Lisa Dailey, executive director of the Treatment Advocacy Center, a national nonprofit that pushes for access to mental health treatment, said jailing people for attempting suicide criminalizes mental illness. “Prison or jail are the worst settings you can possibly be because you’re in a psychiatric crisis,” she said. Even if the care is good, she said, “being incarcerated is a traumatizing experience.”

Studies have shown that the risk of self-harm in prison increases if someone has been held in solitary confinement or has previously attempted suicide.

The Fort Peck reservation isn’t the only jurisdiction where people can be jailed after a suicide attempt. In New Hampshire, suicidal people often end up in the state’s only secure facility: the men’s prison.

After the Fort Peck tribes approached Carpenter’s Native American politics class last year for ideas, he and his undergraduate students began consulting with tribal members and others in Montana and working to research potential alternatives to jail.

The Flathead tribe in western Montana, for instance, specifies that people should be held in the “least restrictive environment” possible to protect their well-being, short of a jail cell. Carpenter said this could take the form of a “safe house” that separates a person from weapons.

Other potential fixes include requiring that a mental health worker accompany police during interactions with a suicidal person to ensure that jail is the last resort, and creating a new “mental health code” that would treat suicidal people differently from those who pose a threat to others.

The state of Colorado put $9.5 million toward community-based health treatment in 2017, then made it illegal to jail people awaiting mental health evaluations who hadn’t been charged with a crime.

But places like reservations may have no choice. “With no resources, there’s very little you can do about any of those issues,” Dailey said.

The IHS office has sufficient funds to hire four more mental health workers for Fort Peck. “We’re definitely aggressively trying to fill empty vacancies,” said Steve Williamson, chief medical officer of the IHS’ Billings area office.

But the positions have been difficult to fill. IHS and other health providers in northeastern Montana struggle to attract candidates to live in a region 70 miles from the nearest Walmart, with few jobs or entertainment options for families.

FourStar said the tribes hope to use covid relief aid to improve behavioral health services so that suicide attempts can be treated as civil cases instead of criminal ones. “I think this will go somewhere, as long as we can get the manpower,” she said.

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If you or someone you know is in crisis, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text HOME to the Crisis Text Line at 741741.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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KHN’s ‘What the Health?’: Dems Agree to Agree, But Not on What to Agree On

Thu, 10/21/2021 - 2:45pm

Can’t see the audio player? Click here to listen on Acast. You can also listen on Spotify, Apple Podcasts, Stitcher, Pocket Casts or wherever you listen to podcasts.

Negotiations over what to include in — and cut from — the domestic spending package on Capitol Hill are reportedly making progress, but so far all Democrats have to show for their efforts to enact President Biden’s health and other social spending agenda is a continuing promise to keep trying.

Meanwhile, Biden administration officials unveil plans to provide covid-19 vaccines to younger children without looking like they are prejudging the science, in an attempt to avoid the mixed messaging that presaged the rollout of booster doses for adults.

This week’s panelists are Julie Rovner of Kaiser Health News, Joanne Kenen of Politico and Johns Hopkins, Tami Luhby of CNN and Rachel Cohrs of Stat.

Among the takeaways from this week’s episode:

  • While there is a different feeling among Democrats on Capitol Hill right now, meeting the goal of both the House and Senate passing the social spending legislation by the end of October still seems very unlikely. What might be possible is that negotiators could agree on a framework by that deadline that would allow Congress to go back to pass an infrastructure bill while they continue fleshing out the social spending bill. Also, things are likely to fall apart a few more times before anything is finally accomplished.
  • The Congressional Budget Office this week estimated the effect on health insurance that the House Committee version of the bill would produce. It found a big boost in insurance coverage but a decrease in employer-provided coverage. The CBO also predicted a big loss in employer coverage when the Affordable Care Act passed, but that did not happen.
  • Neither the House nor the Senate version of the annual spending bill (not the same as the social spending bill) for the Department of Health and Human Services includes the Hyde Amendment language that bans federal funding for most abortions. But the bill cannot pass the Senate without the language, as it would need 60 votes. This is really an example of virtue signaling for progressives, though it is hard to predict how the abortion debate will continue to play out if the Supreme Court, as expected, overrules Roe v. Wade this term.
  • The Biden administration has until Nov. 15 to name someone to run the FDA. The leading candidate is reportedly Robert Califf, who led the agency during the last year of President Barack Obama’s administration. Yet he has baggage similar to that of Janet Woodcock, the current acting commissioner, whom the Biden administration had first eyed for the job. Some Senate Democrats oppose Woodcock for her permissive attitude toward the approval of opioids in years past.
  • Speaking of the FDA, the agency released long-awaited regulations this week to allow for the over-the-counter sale of hearing aids. The idea has had bipartisan support and the OTC sale will make a big difference in affordability and accessibility. Without these regulations, people in many states needed to see an audiologist to get hearing aids. Some places simply have no audiologists.
  • On covid, the White House seems to be a bit more careful this time on messaging its plans for vaccinating children under 12 than they were in unveiling their plans for boosters. Officials made a mess of communications surrounding boosters for adults. This time they are emphasizing they won’t prejudge the science and will leave the actual medical decisions up to the FDA and Centers for Disease Control and Prevention.
  • With a few exceptions, vaccine mandates seem to be working. Some of the places that initially offered their workers a testing option — including New York City — are now taking that away. Ultimately, though, the vaccine mandates are again causing fissures in the nation’s social fabric.
  • Nurses are a big part of the “Great Resignation.” They are also leaving traditional staff positions to make much more money as travel nurses. This contributes to health care cost inflation and disrupts continuity of care. It’s a huge issue.

Plus, for extra credit, the panelists recommend their favorite health policy stories of the week they think you should read too:

Julie Rovner: KHN’s “Hygienists Brace for Pitched Battles With Dentists in Fights Over Practice Laws,” by Giles Bruce.

Tami Luhby: Modern Healthcare’s “Rural Reckoning: COVID-19 Highlights Long-Standing Challenges Facing Rural Hospitals. Will It Create Momentum for Change?” by Jessie Hellmann.

Joanne Kenen: The Atlantic’s “‘I Don’t Know That I Would Even Call It Meth Anymore,’” by Sam Quinones.

Rachel Cohrs: U.S. News & World Report’s “Debt After Death: The Painful Blow of Medicaid Estate Recovery,” by Sarah True.

To hear all our podcasts, click here.

And subscribe to KHN’s What the Health? on Spotify, Apple Podcasts, Stitcher, Pocket Casts or wherever you listen to podcasts.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Worn-Out Nurses Hit the Road for Better Pay, Stressing Hospital Budgets — and Morale

Thu, 10/21/2021 - 5:00am

In parts of the country where covid-19 continues to fill hospitals, a rotating cast of traveling nurses helps keep intensive care units fully staffed. Hospitals have to pay handsomely to get that temporary help, and those higher wages are tempting some staff nurses to hit the road, too.

Nearly two years into the pandemic, there’s some truth in a joke circulating among frustrated ICU nurses: They ask their hospitals for appropriate compensation for the hazards they’ve endured. And the nurses are rewarded with a pizza party instead.

Theresa Adams said that’s what happened at the Ohio hospital where she worked. The facility across town was offering bonuses to keep its nurses from leaving. But not hers. They got a pizza party.

“I heard a lot of noise about ‘Well, this is what you signed up for.’ No, I did not sign up for this,” she said of the unparalleled stress brought on by the pandemic.

Adams is an ICU nurse who helped build and staff covid units in one of Ohio’s largest hospitals. She recently left for a lucrative stint as a travel nurse in California.

Travel nurses take on temporary assignments in hospitals or other health care facilities that have staffing shortages. The contracts typically last a few months and usually pay more than staff positions.

Adams hopes to return to her home hospital eventually, though she’s irritated at management at the moment.

“I did not sign up for the facility taking advantage of the fact that I have a calling,” she said. “There is a difference between knowing my calling and knowing my worth.”

A reckoning may be on its way as hospitals try to stabilize a worn-out workforce.

The use of traveling nurses took off in the 1980s in response to nursing shortages. Although they’ve always been paid more for their flexibility, some traveling ICU nurses can now pull in as much as $10,000 a week, which can be several times more than staff nurses earn.

While some hospitals have offered retention bonuses or increased pay for permanent staff members, nurses say it doesn’t compare to the financial bonanza of traveling. Hospital managers now find themselves trapped in a pricey hiring cycle — competing for, in particular, the most highly trained critical care nurses who can monitor covid patients on the advanced life-support devices known as ECMO (extracorporeal membrane oxygenation) machines.

“Our turnover for ECMO nurses is incredible, because they’re the most seasoned nurses. And this is what all my colleagues are facing, too,” said Jonathan Emling, a nurse and the ECMO director at Ascension St. Thomas Hospital in Nashville.

The shortage of ECMO nurses has prevented the hospital from admitting additional covid patients who need their blood oxygenated outside their body, he said. No more staff nurses have enough experience to start the training.

“We will train these people and then six months later they will be gone and traveling,” Emling said. “So it’s hard to invest so much in them trainingwise and timewise to see them leave.”

And when they leave, hospitals are often forced to fill the spot with a traveler.

“It’s like a Band-Aid,” said Dr. Iman Abuzeid, co-founder of a San Francisco nurse recruiting company called Incredible Health. “We need it now, but it is temporary.”

Incredible Health helps to quickly place full-time staff nurses in some of the country’s largest health systems. The number of listings for full-time, permanent nurses on the company’s platform has shot up 200% in the past year.

To help hospitals, some states are chipping in to hire travel nurses. But for many hospitals, the higher costs are straining their budgets, which is especially difficult for those that have suspended elective surgeries — often a hospital’s biggest moneymaker — to accommodate covid patients.

“Every executive we interact with is under pressure to reduce the number of traveler nurses on their teams, not just from a cost standpoint but also from a quality-of-care standpoint,” Abuzeid said.

It’s hard on morale as well: Camaraderie suffers when newcomers need help finding syringes or other supplies but may be paid two or three times as much as the staff nurses showing them the ropes.

Some hospitals are trying to stop the turnover by offering big signing bonuses to permanent nurses, as well as loan forgiveness or tuition assistance to pursue additional education. Hospitals have also hiked pay for nurses as they earn certifications, especially in critical care.

Other medical centers are looking outside the U.S.

Henry Ford Health System in Michigan announced plans to bring in hundreds of nurses from the Philippines. Smaller community hospitals are looking abroad, too. City-owned Cookeville Regional Medical Center, in a Tennessee town of 35,000, is now recruiting its first foreign nurses.

“The cost for what we pay for a local recruiter to bring us one full-time staff member is more expensive than what we are going to be spending to bring one foreign nurse,” said Scott Lethi, chief nursing officer at Cookeville Regional.

Lethi hopes the staffers from overseas will decide to stay more than a year or two. He said even new nurses sometimes leave or burn out: Cookeville hired a few recent graduates of U.S. nursing programs who quit after just a few months.

Among ICU nurses of all ages, two-thirds have considered leaving the profession because of the pandemic, according to a survey published in September by the American Association of Critical-Care Nurses.

When a nurse leaves — whether to retire, become a travel nurse or work in another field — the remaining nurses can be stretched dangerously thin, caring for more patients at once. Covid patients are particularly demanding, especially those on ventilators or ECMO machines who may require one-on-one care round-the-clock. Covid patients may be hospitalized for weeks or months.

“My ability to care for people has suffered. I know that I have missed things otherwise I would not have missed had I had the time to spend,” said Kevin Cho Tipton, an advanced practice nurse in the South Florida public health system. “Many of us feel like we’re becoming worse at our jobs.”

The worry about providing substandard care weighs heavily on nurses. But in the end, Tipton said, it’s the patients who suffer.

This story is part of a partnership that includes WPLN, NPR and KHN.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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DC’s Harllee Harper Is Using Public Health Tools to Prevent Gun Violence. Will It Work?

Thu, 10/21/2021 - 5:00am

After four people were murdered in one week in early September — all in the same Washington, D.C., neighborhood — residents made a plea for help.

“We’ve been at funerals all week,” said Janeese Lewis George, a City Council member who represents the neighborhood. “What can we do as a community?”

She was speaking to dozens of people at a vigil site, a tree adorned with teddy bears and candles along a street lined with rowhouses. According to police, the area, known as Brightwood Park, has been plagued by several dozen violent, gun-related crimes over the past year. When Lewis George asked whether the crowd had known anyone who’d been shot, most people raised their hands.

Earlier that day, five council members joined Lewis George in asking Mayor Muriel Bowser for assistance — not in the form of more police, but from the city’s first-ever gun violence prevention director, Linda Harllee Harper.

Harllee Harper knows Brightwood Park, having grown up near the heavily Black and Latino neighborhood, which has recently begun to attract white residents, too. She knows the local stories, both good and bad. Some families have lived there for decades, witnessing generational poverty and government neglect. During the 1990s, parts of it were considered a “war zone” because of rampant drug- and gang-related activity. She still lives in the same ward with her husband and son, who plays basketball at the local recreation center with the children of a recent murder victim.

Her investment in finding a solution is clear. “It’s not a new development,” Harllee Harper told KHN. “My view of gun violence is shaped by how much loss I’ve experienced. I’ve had friends who have been killed and I also have had young people that I have worked with be killed.”

D.C. began 2021 with two crises: the coronavirus pandemic and a gun violence epidemic. To respond to the latter, Bowser advanced plans to draw on lessons learned from the former. She started by creating a position, one that anti-gun violence groups had long requested and became too urgent to ignore: gun violence prevention director. Enter Harllee Harper, who was appointed Jan. 28.

About three weeks later, the mayor declared a public health emergency over gun violence and created an “emergency operations center” that mirrored the city’s covid-19 response. No part of the U.S. has been spared from an increase in murders during the pandemic. And in the nation’s capital the murder toll is outpacing last year’s, which reached 198, a 16-year high. Per capita, that’s about 29 murders per 100,000 residents.

The City Council has directed unprecedented funding to support the efforts.

Harllee Harper, 56, started her 20-plus-year career at D.C. Public Schools as a substance abuse prevention and intervention coordinator. Most recently, she was senior deputy director for the D.C. Department of Youth Rehabilitation Services, where she helped overhaul the agency.

“I’ve run programs before, but this was a different level of limelight” than something she would have signed up for on her own, she said.

Nine months into this new role, Harllee Harper’s most powerful tool is the mayor’s initiative, Building Blocks. Drawing on public health strategies to contain the spread of gun violence, it’s designed to treat the immediate symptoms and root causes of community violence.

Its workers operate almost as contact tracers, whose methods have become familiar during the pandemic. They enter targeted communities to form relationships and connect high-risk residents to violence interrupters, who are trained to de-escalate conflict. They also arrange for resources, like drug addiction treatment and housing assistance. The idea is to reach the small number of people who engage in dangerous behavior and invest in them and their neighborhood.

“Hopelessness combined with a gun, combined with substance abuse, is a really bad combination. And I think that’s what we are seeing right now,” said Harllee Harper.

Building Blocks is up and running in about a third of its targeted 151 blocks — 2% of the city — that were connected to 41% of last year’s gunshot-related crimes last year. (Brightwood Park is not on this list but is included in the city’s fall crime prevention initiative run by the police department.)

These diverse neighborhoods are home to people who tend to be poorer and lack access to resources and opportunities. Statistics among covid and murder victims look similar: The same neighborhoods were hit hardest and the vast majority of deaths have befallen Black people.

D.C. stemmed the spread of covid far more efficiently than the nation as a whole, in part through government action. The city’s crash course on public health during the pandemic could mean it’s better situated to address gun violence. “We can explain certain things through this public health lens and people can understand it a bit better,” said David Muhammad, executive director of the National Institute for Criminal Justice Reform.

He said D.C.’s approach is unique and Harllee Harper’s position is rare. “If you claim to want to reduce gun violence in your city, prove it. Whose full-time job is it in your city to do that? In most cities, it is zero,” he said. “Don’t tell me the police chief. That’s a small portion of their job.”

For the few dozen cities that have some sort of anti-violence czar, the position is relatively new. Richmond, California, is an exception, with an agency dedicated to reducing gun violence since 2008. Richmond’s Office of Neighborhood Safety has been heralded as a model. By 2013, Richmond went from more than 40 homicides a year to 16, according to Giffords Law Center to Prevent Gun Violence — its lowest number in three decades.

Harllee Harper’s position is housed not within the public safety agency but the city administrator’s office, presumably affording her more authority and oversight of government programs.

And Building Blocks created a mobile app with which its employees can flag requests during walk-throughs of select neighborhoods. An employee could make a request using the city’s “311” service line to repair a streetlight that is out, for example, and the agency responsible would prioritize it because it came from Building Blocks.

There’s no guarantee these interventions will work, though multiple studies have shown positive outcomes of violence interrupters or infrastructure improvements, such as cleaning and transforming vacant lots and abandoned buildings.

But Daniel Webster, director of the Johns Hopkins Center for Gun Violence Prevention and Policy in Baltimore, said it’s important to track successes and failures because efforts like the one Harllee Harper is spearheading don’t “always work in all places” and there are lessons to learn when they don’t.

“We can’t expect the workers to just perform miracles,” said Webster.

While expectations are high, Harllee Harper’s success depends on whether government and business leaders will respond with the same urgency as they did when the health director requested action.

“The biggest hurdle really is getting all of government to buy into a new day and a new way to get things done,” said council member Charles Allen, who chairs a committee that created Harllee Harper’s position. “Bureaucracy is not nimble.”

“My colleagues in the sister agencies across the city, when Building Blocks calls, they are very, very responsive,” said Harllee Harper. “We’re working together to create performance metrics for agencies related to gun violence prevention.”

Some residents remain skeptical. Residents of the first Building Blocks neighborhood said the follow-up continues to lag. Jamila White, an elected member of the Advisory Neighborhood Commission, said she had several conversations with Harllee Harper and gave her a tour to point out the needs, including quick fixes like adding or fixing streetlights and regular street-sweeping. White has yet to see expedited results, she said, but respects Harllee Harper and admits that no one could address all the issues, many rooted in poverty, alone.

“There’s a lot of shared agreement. But you know, having a shared agreement and having political will and power to do something is a different thing,” said White.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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The Yelp of Covid: Vigilantes Crowdsource Pandemic Safety Tips for Consumers

Thu, 10/21/2021 - 5:00am

[Updated on Oct. 21]

ATHENS, Ga. — Melissa Lee had more to deal with than funeral planning when her husband, Dan Williams, died by suicide in January. She also was faced with continuing his 1,400-member Facebook group, “Athens, GA Mask Grades 2.0,” designed to help residents of Athens protect themselves from covid-19 by grading local businesses on their safety measures.

The group follows a strict template that Melissa Lee compares to a Yelp review. The review includes information about a company’s physical distancing provisions, the availability of outdoor services, vaccination requirements, and the percentages of masked employees and customers.

“A mask is like a visible sign of whether or not you’re listening to the same information,” said Lee, who works in donor relations at the University of Georgia. “There is some beauty in supporting those that are aligned with you. But it’s also just kind of sad that there’s two sides to that.”

Such covid vigilantes have cropped up in multiple cities, appearing where safety guidelines are lax despite high numbers of positive cases.

Some states, such as Florida, go as far as preventing local safety mandates, though the Sunshine State has been sued by a group of parents for banning strict mask mandates in schools.

In Georgia, although Republican Gov. Brian Kemp declared a state of emergency due to covid, no state mask mandate exists. An executive order allows businesses to disregard the covid safety ordinances created by local governments requiring masks.

Similarly, in Tennessee, Republican Gov. Bill Lee issued an executive order that prevents local mask orders in 89 counties.

These states stand in sharp contrast to those with definitive policies, such as California, where masks are required in hospitals, schools and correctional facilities, regardless of vaccination status.

The lack of government action in some communities is forcing everyday people to fill the void, according to Imran Ahmed, CEO of the Center for Countering Digital Hate, an international nonprofit organization designed to disrupt online misinformation.

“You can see here that people are taking action collectively, essentially replicating what governments should be doing, but in a private fashion out of sheer desperation,” Ahmed said.

With about 6,800 members, Alabama-based “Mask Up Huntsville” says its mission is to track the mask compliance of local businesses. Alabama currently recommends wearing a mask indoors but has no mandate. In the public Facebook group, people can also ask for recommendations from others about which doctors and dentists follow responsible covid guidelines, and they can share personal anecdotes about pandemic life. But what isn’t allowed: political statements of any kind.

In Tennessee, a perceived lack of information from government authorities led to a private Facebook group called “Knoxville Parents Against Covid.” Amanda Jamison Gillen created the group to allow parents to report if their child tests positive for covid, as an alert to other parents amid a vacuum of information at the time from the schools.

Knox County Schools recommended the use of face masks in 2020 but did not require them when classes resumed in August. In late September, however, the school district updated its covid policy following an injunction by a district judge. It now requires masks for all students, staffers and visitors, and students are required to isolate if they test positive for covid.

Chyna Brackeen joined the Knoxville group the day it was created. She became one of the group’s administrators about a week later to help handle its rapid growth and check for misinformation.

“One of the major reasons we decided to require moderator approval of posts was so that conspiracy theories wouldn’t run rampant,” Brackeen said.

Misinformation about covid is persistent online, but Ahmed said it is not the impetus for creating such groups. The sheer amount of information online can make it hard to tell what’s true. This overabundance of information has “trapped tens of millions of Americans in an alternative world in which horse dewormer shoved up your bum can fix covid,” he said.

Arthur Caplan, a professor of bioethics at New York University’s Grossman School of Medicine in New York City, said community-based covid-safety social media groups help provide balance.

“Social media has become a kind of cesspool for the crazy,” Caplan said. “I like using it as a place where you could really protect yourself, your kids, try to form communities that are trying to do the right thing, rather than undermine public health efforts.”

Dan Williams started the Athens page after being inspired by the efforts in Huntsville. His public page reached over 2,000 members before being reported by Facebook users who disagreed with the group’s messaging. He created a private “2.0” version as a workaround.

Williams had a history of mental health issues, and the pandemic may have made matters worse, Melissa Lee said. “That year of boiling society could have very well affected his mental health,” she said. “It clearly bothered him.”

But members continued his work, stepping up as volunteer administrators for the site after his suicide, she said. While it’s difficult to track, the Facebook group may be having a larger impact.

For example, in August, a group member posted about Earth Fare, a grocery store chain that did not support mask mandates. Two days after being called out on social media, Earth Fare Athens posted the following on Facebook: “We whole heartedly agree with the concerns mentioned. Effective immediately, we will be following all locally mandated guidelines.” The company declined to comment for this story.

Facebook and other social media platforms may be valuable in amplifying and endorsing public health recommendations, said Glen Nowak, co-director of the Center for Health & Risk Communication at the University of Georgia. “The broad idea is to show people who are in favor of something that there are other people who are also in favor, that you’re not alone.”

Still, Nowak said, there is a need to proceed with caution, especially when it comes to specific scientific questions. “The value of these groups is in sharing experiences,” he said. “It’s hard to rely on non-expert sources for questions that really mostly involve science or medicine.”

There’s also concern that online groups are not widely accessible beyond communities that are white, educated and savvy with social media, Caplan noted.

“The usual obstacles are out there for poor people who might be sympathetic but don’t have internet access,” he said. Or those who “don’t feel comfortable getting into a discussion group that’s almost exclusively white.”

Yet in the absence of covid safety mandates, groups like these prove useful to consumers such as Travis Henry. It helps him make informed decisions.

“I don’t want to know about aggregate trends about every grocery store in America,” Henry said. “I want to know about the half-dozen that I can drive to, and which one has the largest percentage of people who are masked, or which one has put up plexiglass windows.”

Need Help?

If you or someone you know is in crisis, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text HOME to the Crisis Text Line at 741741.

[Correction: This article was revised at 4:50 p.m. ET on Oct. 21, 2021, to correct the name of Dan Williams, who did not use the same last name as his wife.]

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Científicos buscan la causa de una misteriosa inflamación en niños relacionada con covid

Wed, 10/20/2021 - 12:44pm

Como la mayoría de los niños con covid, Dante y Michael DeMaino no parecían tener síntomas graves.

Infectados a mediados de febrero, ambos perdieron los sentidos del gusto y del olfato. Dante, de 9 años, tuvo un día de fiebre baja. Michael, de 13, sintió un “cosquilleo en la garganta”, dijo su madre, Michele DeMaino, de Danvers, Massachusetts.

En una visita de seguimiento, “el pediatra auscultó corazón y pulmones, y todo parecía perfecto”, contó DeMaino.

Luego, a finales de marzo, Dante volvió a tener fiebre. Después de examinarlo, el médico dijo que probablemente su enfermedad no era “nada para preocuparse”, pero le pidió a DeMaino que lo llevara a urgencias si la fiebre subía a más de 40 grados Celsius.

Dos días después, Dante seguía con fiebre, dolor de cabeza y empezó a vomitar. Su madre lo llevó a urgencias, donde la fiebre subió a 40,5. En el hospital, los ojos de Dante se inflamaron, sus párpados se volvieron rojos, sus manos empezaron a hincharse y un sarpullido rojo brillante se extendió por su cuerpo.

En el hospital diagnosticaron a Dante con síndrome inflamatorio multisistémico infantil, o MIS-C, una complicación rara, asociada a covid-19, y potencialmente mortal, en la que un sistema inmunitario hiperactivo ataca el cuerpo del niño. Los síntomas —fiebre, dolor de estómago, vómitos, diarrea, ojos inyectados en sangre, sarpullido y mareos— suelen aparecer entre dos y seis semanas después de lo que suele ser una infección leve o incluso asintomática.

Más de 5,200 de los 6,2 millones de niños estadounidenses a los que se les ha diagnosticado covid han desarrollado MIS-C. Un 80% de los pacientes con MIS-C son tratados en unidades de cuidados intensivos, el 20% requiere ventilación mecánica y 46 han muerto.

A lo largo de la pandemia, el MIS-C ha seguido un patrón predecible, enviando a niños al hospital aproximadamente un mes después de una oleada de covid. Las unidades de cuidados intensivos pediátricos —que trataron a miles de pacientes jóvenes durante la aparición de la variante delta a finales de verano— luchan ahora por salvar al nuevo grupo de niños extremadamente enfermos.

El sur se ha visto especialmente afectado. En el Hospital Infantil Shawn Jenkins de la Universidad Médica de Carolina del Sur, por ejemplo, los médicos trataron en septiembre a 37 niños con covid y a nueve con MIS-C, la cantidad mensual más alta desde que comenzó la pandemia.

Los médicos no tienen forma de prevenir el MIS-C, porque todavía no saben exactamente qué lo causa, señaló el doctor Michael Chang, profesor de pediatría en el Children’s Memorial Hermann Hospital de Houston. Todo lo que los médicos pueden hacer es instar a los padres a vacunar a los niños que sean elegibles, y rodear a los más pequeños de personas vacunadas.

Dada la enorme magnitud de la pandemia, los científicos de todo el mundo buscan respuestas.

Aunque la mayoría de los niños que desarrollan MIS-C estaban sanos, el 80% tuvo complicaciones cardíacas. Las arterias coronarias de Dante se dilataron, lo que dificultó el bombeo de sangre del corazón y el suministro de nutrientes a sus órganos. Si no se trata rápidamente, el niño puede entrar en shock. Algunos pacientes desarrollan anomalías del ritmo cardíaco o aneurismas, cuando las paredes de las arterias se tapan y amenazan con reventar.

“Fue traumático”, contó DeMaino. “Me quedé con él en el hospital todo el tiempo”.

Historias como ésta plantean importantes cuestiones sobre las causas del MIS-C.

“Es el mismo virus y la misma familia, así que ¿por qué un niño contrae MIS-C y el otro no?”, se preguntó la doctora Natasha Halasa, del Instituto Vanderbilt sobre Infección, Inmunología e Inflamación.

Los médicos han mejorado a la hora de diagnosticar y tratar el MIS-C. La tasa de mortalidad ha descendido del 2,4% al 0,7% desde el comienzo de la pandemia. Los adultos también pueden desarrollar un síndrome inflamatorio post-covid, llamado MIS-A; que es aún más raro que el MIS-C, con una tasa de mortalidad siete veces mayor que la observada en niños.

Aunque el MIS-C es nuevo, los médicos pueden tratarlo con terapias utilizadas desde hace décadas para la enfermedad de Kawasaki, un síndrome pediátrico que también causa inflamación sistémica. Aunque los científicos nunca han identificado la causa de la enfermedad de Kawasaki, muchos sospechan que se desarrolla tras una infección.

Los investigadores del Boston Children’s Hospital, y otras instituciones, están buscando pistas en los genes de los niños.

En un estudio realizado en julio, investigadores identificaron variantes genéticas raras en tres de los 18 niños estudiados. Resulta significativo que todos los genes estén implicados en la “eliminación de los frenos” del sistema inmunitario, lo que podría contribuir a la hiperinflamación observada en el MIS-C, señaló la doctora Janet Chou, jefa de inmunología clínica del Boston Children’s, que dirigió el estudio.

Chou reconoce que su estudio —que encontró variantes genéticas en sólo el 17% de los pacientes— no resuelve el rompecabezas. Y plantea nuevas preguntas: si estos niños son genéticamente susceptibles a los problemas inmunitarios, ¿por qué no enfermaron gravemente a causa de infecciones infantiles anteriores?

Algunos investigadores afirman que el aumento de las tasas de MIS-C entre las minorías raciales y étnicas de todo el mundo —en Estados Unidos, Francia y el Reino Unido— puede deberse a la genética.

Otros señalan que las tasas de MIS-C son un reflejo de las mayores tasas de covid en estas comunidades, que han sido impulsadas por factores socioeconómicos como las condiciones de trabajo y de vida de alto riesgo.

“No sé por qué algunos niños lo desarrollan y otros no”, dijo el doctor Dusan Bogunovic, investigador de la Escuela de Medicina Icahn de Mount Sinai que ha estudiado las respuestas de los anticuerpos en el MIS-C. “¿Se debe a la genética o a la exposición ambiental? La verdad puede estar en algún punto intermedio”.

Un enemigo oculto y un intestino permeable

La mayoría de los niños con MIS-C dan negativo para las pruebas de covid, lo que sugiere que el organismo ya ha eliminado al nuevo coronavirus de la nariz y las vías respiratorias superiores.

Esto llevó a los médicos a suponer que el MIS-C era una enfermedad “post-infecciosa”, que se desarrollaba después que “el virus hubiera desaparecido por completo”, señaló el doctor Hamid Bassiri, especialista en enfermedades infecciosas pediátricas y codirector del programa de desregulación inmunológica del Hospital Infantil de Filadelfia.

Ahora, sin embargo, “están surgiendo pruebas de que tal vez no sea así”, dijo Bassiri.

Incluso si el virus ha desaparecido de la nariz del niño, podría estar al acecho —y diseminándose— en otras partes del cuerpo, indicó Chou. Esto podría explicar por qué los síntomas aparecen tanto tiempo después de la infección inicial del niño.

El doctor Lael Yonker observó que los niños con MIS-C son mucho más propensos a desarrollar síntomas gastrointestinales —como dolor de estómago, diarrea y vómitos— que los problemas respiratorios que suelen observarse en el covid agudo.

En algunos niños con MIS-C, el dolor abdominal ha sido tan intenso que los médicos los diagnosticaron erróneamente con apendicitis; algunos incluso fueron operados antes de que sus médicos se dieran cuenta del verdadero origen de su dolor.

Yonker, neumólogo pediátrico del Hospital Infantil MassGeneral de Boston, encontró recientemente pruebas de que el origen de esos síntomas podría ser el coronavirus, que puede sobrevivir en el intestino durante semanas después de desaparecer de las fosas nasales.

En un estudio publicado en mayo en The Journal of Clinical Investigation, Yonker y sus colegas demostraron que más de la mitad de los pacientes con MIS-C tenían material genético —llamado ARN— del coronavirus en sus heces.

El cuerpo descompone el ARN viral muy rápidamente, explicó Chou, por lo que es poco probable que el material genético de una infección por covid se encuentre todavía en las heces de un niño un mes después. Si se encuentra, lo más probable es que sea porque el coronavirus se ha instalado en un órgano, como el intestino.

Aunque el coronavirus puede prosperar en el intestino, es un terrible huésped.

En algunos niños, el virus irrita el revestimiento intestinal, creando brechas microscópicas que permiten que las partículas virales escapen al torrente sanguíneo, dijo Yonker.

Los análisis de sangre de los niños con MIS-C revelaron que tenían un alto nivel del antígeno espiga (o pico) del coronavirus, una importante proteína que permite al virus entrar en las células humanas. Los científicos han dedicado más tiempo a estudiar el antígeno de espiga que cualquier otra parte del virus. Es el objetivo de las vacunas contra covid, así como de los anticuerpos producidos naturalmente durante la infección.

“No vemos que el virus vivo se replique en la sangre”, señaló Yonker. “Pero las proteínas espiga se desprenden y se filtran a la sangre”.

Según Yonker, las partículas virales en la sangre podrían causar problemas que van más allá del malestar estomacal. Es posible que estimulen el sistema inmunitario en exceso.

En su estudio, Yonker cuenta como trató a un niño de 17 meses gravemente enfermo cuyo cuadro se agravó aún más a pesar de los tratamientos habituales. Recibió permiso para tratarlo con un fármaco experimental, larazotida, diseñado para curar los intestinos permeables. Y funcionó.

Yonker recetó larazotida a otros cuatro niños, entre ellos Dante, que también recibió un medicamento utilizado para tratar la artritis reumatoide. Mejoró.

Pero la mayoría de los niños con MIS-C mejoran, incluso sin medicamentos experimentales. Sin un grupo de comparación, no hay forma de saber si la larazotida funciona realmente. Por eso Yonker está inscribiendo a 20 niños en un pequeño ensayo clínico aleatorio de larazotida, que proporcionará pruebas más sólidas.

Soldados rebeldes

El doctor Moshe Arditi también ha establecido conexiones entre los síntomas de los niños y lo que podría estar causándolos.

Aunque los primeros médicos que trataron la MIS-C lo compararon con la enfermedad de Kawasaki —que también provoca ojos rojos, sarpullidos y fiebres altas—, Arditi señaló que la MIS-C se parece más al síndrome de shock tóxico, una afección potencialmente mortal causada por determinados tipos de bacterias estreptocócicas o estafilocócicas que liberan toxinas en la sangre. Ambos síndromes provocan fiebre alta, trastornos gastrointestinales, disfunción del músculo cardíaco, caída de la presión arterial y síntomas neurológicos, como dolor de cabeza y confusión.

El shock tóxico puede producirse tras un parto o la infección de una herida, aunque los casos más conocidos se produjeron en los años 70 y 80 en mujeres que utilizaron un tipo de tampón que ya no se usa.

Las toxinas liberadas por estas bacterias pueden desencadenar una reacción exagerada de los principales combatientes del sistema inmunitario, denominados células T, que coordinan la respuesta del sistema inmunitario, explicó Arditi, director de la división de enfermedades infecciosas pediátricas del Centro Médico Cedars-Sinai.

Las células T son tremendamente poderosas, por lo que el cuerpo normalmente las activa de forma precisa y controlada, dijo Bassiri. Una de las lecciones más importantes que deben aprender las células T es que deben dirigirse a los malos y dejar en paz a los civiles. De hecho, un sistema inmunitario sano suele destruir muchas células T que no pueden distinguir entre los gérmenes y el tejido sano para evitar las enfermedades autoinmunes.

En una respuesta típica a una sustancia extraña —conocida como antígeno—, el sistema inmunitario activa sólo alrededor del 0,01% de todas las células T, indicó Arditi.

Sin embargo, las toxinas producidas por ciertos virus y las bacterias que causan el shock tóxico contienen “superantígenos”, que eluden las salvaguardias normales del organismo y se adhieren directamente a las células T. Esto permite que los superantígenos activen entre el 20% y el 30% de las células T a la vez, generando un peligroso enjambre de glóbulos blancos y proteínas inflamatorias denominadas citoquinas, explicó Arditi.

Esta respuesta inflamatoria masiva provoca daños en todo el organismo, desde el corazón hasta los vasos sanguíneos y los riñones.

Aunque múltiples estudios han constatado que los niños con MIS-C tienen menos células T de lo normal, el equipo de Arditi ha encontrado un aumento explosivo de un subtipo de células T capaces de interactuar con un superantígeno.

Varios grupos de investigación independientes —entre los que se encuentran investigadores de la Escuela de Medicina de Yale, los Institutos Nacionales de la Salud (NIH) y la Universidad de Lyon en Francia— han confirmado los hallazgos de Arditi, sugiriendo que algo, muy probablemente un superantígeno, causó un enorme aumento de este subtipo de células T.

Aunque Arditi ha propuesto que partes de la proteína espiga del coronavirus podrían actuar como un superantígeno, otros científicos afirman que el superantígeno podría proceder de otros microbios, como las bacterias.

“Ahora se está buscando urgentemente la fuente del superantígeno”, afirmó la doctora Carrie Lucas, profesora de inmunobiología en Yale, cuyo equipo ha identificado cambios en las células inmunitarias y en las proteínas de la sangre de los niños con MIS-C.

Futuro incierto

Un mes después de que Dante saliera del hospital, los médicos le hicieron un ecocardiograma para ver si su corazón tenía daños persistentes.

Para alivio de su madre, su corazón había vuelto a la normalidad.

Hoy, Dante es un niño de 10 años lleno de energía que ha vuelto a jugar al hockey y al béisbol, a nadar y a patinar.

“Ha vuelto a realizar todas estas actividades”, dijo DeMaino, y contó que los médicos de Dante volvieron a examinar su corazón seis meses después de su enfermedad y volverán a hacerlo al cabo de un año.

Al igual que Dante, la mayoría de los niños que sobreviven al MIS-C parecen recuperarse completamente, según un estudio publicado en marzo en JAMA.

Estas recuperaciones tan rápidas sugieren que los problemas cardiovasculares relacionados con el MIS-C son el resultado de una “inflamación severa y un estrés agudo” más que de una enfermedad cardíaca subyacente, según los autores del estudio, denominado Overcoming COVID-19.

Aunque los niños que sobreviven a la enfermedad de Kawasaki tienen un mayor riesgo de sufrir problemas cardíacos a largo plazo, los médicos no saben cómo les irá a los supervivientes del MIS-C.

Los NIH y los Centros para el Control y la Prevención de Enfermedades han puesto en marcha varios ensayos a largo plazo para estudiar a los jóvenes pacientes de covid y sobrevivientes de MIS-C. Los investigadores estudiarán el sistema inmunitario de los niños para buscar pistas sobre la causa del MIS-C, examinarán sus corazones en busca de signos de daños a largo plazo y controlarán su salud a lo largo del tiempo.

DeMaino dijo que ella está mucho más preocupada por la salud de Dante que él mismo.

“No tiene ninguna preocupación en el mundo”, contó. “Yo estaba preocupada por la última cita con el cardiólogo, pero él me dijo: ‘Mamá, no tengo ningún problema para respirar. Me siento completamente bien'”.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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‘They Treat Me Like I’m Old and Stupid’: Seniors Decry Health Providers’ Age Bias

Wed, 10/20/2021 - 5:00am

Joanne Whitney, 84, a retired associate clinical professor of pharmacy at the University of California-San Francisco, often feels devalued when interacting with health care providers.

There was the time several years ago when she told an emergency room doctor that the antibiotic he wanted to prescribe wouldn’t counteract the kind of urinary tract infection she had.

He wouldn’t listen, even when she mentioned her professional credentials. She asked to see someone else, to no avail. “I was ignored and finally I gave up,” said Whitney, who has survived lung cancer and cancer of the urethra and depends on a special catheter to drain urine from her bladder. (An outpatient renal service later changed the prescription.)

Then, earlier this year, Whitney landed in the same emergency room, screaming in pain, with another urinary tract infection and a severe anal fissure. When she asked for Dilaudid, a powerful narcotic that had helped her before, a young physician told her, “We don’t give out opioids to people who seek them. Let’s just see what Tylenol does.”

Whitney said her pain continued unabated for eight hours.

“I think the fact I was a woman of 84, alone, was important,” she told me. “When older people come in like that, they don’t get the same level of commitment to do something to rectify the situation. It’s like ‘Oh, here’s an old person with pain. Well, that happens a lot to older people.’”

Whitney’s experiences speak to ageism in health care settings, a long-standing problem that’s getting new attention during the covid pandemic, which has killed more than half a million Americans age 65 and older.

Ageism occurs when people face stereotypes, prejudice or discrimination because of their age. The assumption that all older people are frail and helpless is a common, incorrect stereotype. Prejudice can consist of feelings such as “older people are unpleasant and difficult to deal with.” Discrimination is evident when older adults’ needs aren’t recognized and respected or when they’re treated less favorably than younger people.

In health care settings, ageism can be explicit. An example: plans for rationing medical care (“crisis standards of care”) that specify treating younger adults before older adults. Embedded in these standards, now being implemented by hospitals in Idaho and parts of Alaska and Montana, is a value judgment: Young peoples’ lives are worth more because they presumably have more years left to live.

Justice in Aging, a legal advocacy group, filed a civil rights complaint with the U.S. Department of Health and Human Services in September, charging that Idaho’s crisis standards of care are ageist and asking for an investigation.

In other instances, ageism is implicit. Dr. Julie Silverstein, president of the Atlantic division of Oak Street Health, gives an example of that: doctors assuming older patients who talk slowly are cognitively compromised and unable to relate their medical concerns. If that happens, a physician may fail to involve a patient in medical decision-making, potentially compromising care, Silverstein said. Oak Street Health operates more than 100 primary care centers for low-income seniors in 18 states.

Emogene Stamper, 91, of the Bronx in New York City, was sent to an under-resourced nursing home after becoming ill with covid in March. “It was like a dungeon,” she remembered, “and they didn’t lift a finger to do a thing for me.” The assumption that older people aren’t resilient and can’t recover from illness is implicitly ageist.

Stamper’s son fought to have his mother admitted to an inpatient rehabilitation hospital where she could receive intensive therapy. “When I got there, the doctor said to my son, ‘Oh, your mother is 90,’ like he was kind of surprised, and my son said, “You don’t know my mother. You don’t know this 90-year-old,” Stamper told me. “That lets you know how disposable they feel you are once you become a certain age.”

At the end of the summer, when Stamper was hospitalized for an abdominal problem, a nurse and nursing assistant came to her room with papers for her to sign. “Oh, you can write!” Stamper said the nurse exclaimed loudly when she penned her signature. “They were so shocked that I was alert, it was insulting. They don’t respect you.”

Nearly 20% of Americans age 50 and older say they have experienced discrimination in health care settings, which can result in inappropriate or inadequate care, according to a 2015 report. One study estimates that the annual health cost of ageism in America, including over- and undertreatment of common medical conditions, totals $63 billion.

Nubia Escobar, 75, who emigrated from Colombia nearly 50 years ago, wishes doctors would spend more time listening to older patients’ concerns. This became an urgent issue two years ago when her longtime cardiologist in New York City retired to Florida and a new physician had trouble controlling her hypertension.

Alarmed that she might faint or fall because her blood pressure was so low, Escobar sought a second opinion. That cardiologist “rushed me — he didn’t ask many questions and he didn’t listen. He was sitting there talking to and looking at my daughter,” she said.

It was Veronica Escobar, an elder law attorney, who accompanied her mother to that appointment. She remembers the doctor being abrupt and constantly interrupting her mother. “I didn’t like how he treated her, and I could see the anger on my mother’s face,” she told me. Nubia Escobar has since seen a geriatrician who concluded she was overmedicated.

The geriatrician “was patient,” Nubia Escobar told me. “How can I put it? She gave me the feeling she was thinking all the time what could be better for me.”

Pat Bailey, 63, gets little of that kind of consideration in the Los Angeles County, California, nursing home where she’s lived for five years since having a massive stroke and several subsequent heart attacks. “When I ask questions, they treat me like I’m old and stupid and they don’t answer,” she told me in a telephone conversation.

One nursing home resident in every five has persistent pain, studies have found, and a significant number don’t get adequate treatment. Bailey, whose left side is paralyzed, said she’s among them. “When I tell them what hurts, they just ignore it or tell me it’s not time for a pain pill,” she complained.

Most of the time, Bailey feels like “I’m invisible” and like she’s seen as “a slug in a bed, not a real person.” Only one nurse regularly talks to her and makes her feel she cares about Bailey’s well-being.

“Just because I’m not walking and doing anything for myself doesn’t mean I’m not alive. I’m dying inside, but I’m still alive,” she told me.

Ed Palent, 88, and his wife, Sandy, 89, of Denver, similarly felt discouraged when they saw a new doctor after their long-standing physician retired. “They went for an annual checkup and all this doctor wanted them to do was ask about how they wanted to die and get them to sign all kinds of forms,” said their daughter Shelli Bischoff, who discussed her parents’ experiences with their permission.

“They were very upset and told him, ‘We don’t want to talk about this,’ but he wouldn’t let up. They wanted a doctor who would help them live, not figure out how they’re going to die.”

The Palents didn’t return and instead joined another medical practice, where a young doctor barely looked at them after conducting cursory examinations, they said. That physician failed to identify a dangerous staphylococcus bacterial infection on Ed’s arm, which was later diagnosed by a dermatologist. Again, the couple felt overlooked, and they left.

Now they’re with a concierge physician’s practice that has made a sustained effort to get to know them. “It’s the opposite of ageism: It’s ‘We care about you and our job is to help you be as healthy as possible for as long as possible,’” Bischoff said. “It’s a shame this is so hard to find.”

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 khn.org/columnists to submit your requests or tips.

KFF’s Kaiser Health News and The John A. Hartford Foundation will hold a 90-minute interactive web event on ageism in health care beginning at noon Eastern Time on Thursday, Oct. 21. Join us for a frank, practical and empowering conversation about this pervasive, systemic problem of bias, discrimination or stereotyping based on age.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Scientists Search for Cause of Mysterious Covid-Related Inflammation in Children

Wed, 10/20/2021 - 5:00am

Like most other kids with covid, Dante and Michael DeMaino seemed to have no serious symptoms.

Infected in mid-February, both lost their senses of taste and smell. Dante, 9, had a low-grade fever for a day or so. Michael, 13, had a “tickle in his throat,” said their mother, Michele DeMaino, of Danvers, Massachusetts.

At a follow-up appointment, “the pediatrician checked their hearts, their lungs, and everything sounded perfect,” DeMaino said.

Then, in late March, Dante developed another fever. After examining him, Dante’s doctor said his illness was likely “nothing to worry about” but told DeMaino to take him to the emergency room if his fever climbed above 104.

Two days later, Dante remained feverish, with a headache, and began throwing up. His mother took him to the ER, where his fever spiked to 104.5. In the hospital, Dante’s eyes became puffy, his eyelids turned red, his hands began to swell and a bright red rash spread across his body.

Hospital staffers diagnosed Dante with multisystem inflammatory syndrome in children, or MIS-C, a rare but life-threatening complication of covid-19 in which a hyperactive immune system attacks a child’s body. Symptoms — fever, stomach pain, vomiting, diarrhea, bloodshot eyes, rash and dizziness — typically appear two to six weeks after what is usually a mild or even asymptomatic infection.

More than 5,200 of the 6.2 million U.S. children diagnosed with covid have developed MIS-C. About 80% of MIS-C patients are treated in intensive care units, 20% require mechanical ventilation, and 46 have died.

Throughout the pandemic, MIS-C has followed a predictable pattern, sending waves of children to the hospital about a month after a covid surge. Pediatric intensive care units — which treated thousands of young patients during the late-summer delta surge — are now struggling to save the latest round of extremely sick children.

The South has been hit especially hard. At the Medical University of South Carolina Shawn Jenkins Children’s Hospital, for example, doctors in September treated 37 children with covid and nine with MIS-C — the highest monthly totals since the pandemic began.

Doctors have no way to prevent MIS-C, because they still don’t know exactly what causes it, said Dr. Michael Chang, an assistant professor of pediatrics at Children’s Memorial Hermann Hospital in Houston. All doctors can do is urge parents to vaccinate eligible children and surround younger children with vaccinated people.

Given the massive scale of the pandemic, scientists around the world are now searching for answers.

Although most children who develop MIS-C were previously healthy, 80% develop heart complications. Dante’s coronary arteries became dilated, making it harder for his heart to pump blood and deliver nutrients to his organs. If not treated quickly, a child could go into shock. Some patients develop heart rhythm abnormalities or aneurysms, in which artery walls balloon out and threaten to burst.

“It was traumatic,” DeMaino said. “I stayed with him at the hospital the whole time.”

Such stories raise important questions about what causes MIS-C.

“It’s the same virus and the same family, so why does one child get MIS-C and the other doesn’t?” asked Dr. Natasha Halasa of the Vanderbilt Institute for Infection, Immunology and Inflammation.

Doctors have gotten better at diagnosing and treating MIS-C; the mortality rate has fallen from 2.4% to 0.7% since the beginning of the pandemic. Adults also can develop a post-covid inflammatory syndrome, called MIS-A; it’s even rarer than MIS-C, with a mortality rate seven times as high as that seen in children.

Although MIS-C is new, doctors can treat it with decades-old therapies used for Kawasaki disease, a pediatric syndrome that also causes systemic inflammation. Although scientists have never identified the cause of Kawasaki disease, many suspect it develops after an infection.

Researchers at Boston Children’s Hospital and other institutions are looking for clues in children’s genes.

In a July study, the researchers identified rare genetic variants in three of 18 children studied. Significantly, the genes are all involved in “removing the brakes” from the immune system, which could contribute to the hyperinflammation seen in MIS-C, said Dr. Janet Chou, chief of clinical immunology at Boston Children’s, who led the study.

Chou acknowledges that her study — which found genetic variants in just 17% of patients — doesn’t solve the puzzle. And it raises new questions: If these children are genetically susceptible to immune problems, why didn’t they become seriously ill from earlier childhood infections?

Some researchers say the increased rates of MIS-C among racial and ethnic minorities around the world — in the United States, France and the United Kingdom — must be driven by genetics.

Others note that rates of MIS-C mirror the higher covid rates in these communities, which have been driven by socioeconomic factors such as  high-risk working and living conditions.

“I don’t know why some kids get this and some don’t,” said Dr. Dusan Bogunovic, a researcher at the Icahn School of Medicine at Mount Sinai who has studied antibody responses in MIS-C. “Is it due to genetics or environmental exposure? The truth may lie somewhere in between.”

A Hidden Enemy and a Leaky Gut

Most children with MIS-C test negative for covid, suggesting that the body has already cleared the novel coronavirus from the nose and upper airways.

That led doctors to assume MIS-C was a “postinfectious” disease, developing after “the virus has completely gone away,” said Dr. Hamid Bassiri, a pediatric infectious diseases specialist and co-director of the immune dysregulation program at Children’s Hospital of Philadelphia.

Now, however, “there is emerging evidence that perhaps that is not the case,” Bassiri said.

Even if the virus has disappeared from a child’s nose, it could be lurking — and shedding — elsewhere in the body, Chou said. That might explain why symptoms occur so long after a child’s initial infection.

Dr. Lael Yonker noticed that children with MIS-C are far more likely to develop gastrointestinal symptoms — such as stomach pain, diarrhea and vomiting — than the breathing problems often seen in acute covid.

In some children with MIS-C, abdominal pain has been so severe that doctors misdiagnosed them with appendicitis; some actually underwent surgery before their doctors realized the true source of their pain.

Yonker, a pediatric pulmonologist at Boston’s MassGeneral Hospital for Children, recently found evidence that the source of those symptoms could be the coronavirus, which can survive in the gut for weeks after it disappears from the nasal passages, Yonker said.

In a May study in The Journal of Clinical Investigation, Yonker and her colleagues showed that more than half of patients with MIS-C had genetic material — called RNA — from the coronavirus in their stool.

The body breaks down viral RNA very quickly, Chou said, so it’s unlikely that genetic material from a covid infection would still be found in a child’s stool one month later. If it is, it’s most likely because the coronavirus has set up shop inside an organ, such as the gut.

While the coronavirus may thrive in our gut, it’s a terrible houseguest.

In some children, the virus irritates the intestinal lining, creating microscopic gaps that allow viral particles to escape into the bloodstream, Yonker said.

Blood tests in children with MIS-C found that they had a high level of the coronavirus spike antigen — an important protein that allows the virus to enter human cells. Scientists have devoted more time to studying the spike antigen than any other part of the virus; it’s the target of covid vaccines, as well as antibodies made naturally during infection.

“We don’t see live virus replicating in the blood,” Yonker said. “But spike proteins are breaking off and leaking into the blood.”

Viral particles in the blood could cause problems far beyond upset stomachs, Yonker said. It’s possible they stimulate the immune system into overdrive.

In her study, Yonker describes treating a critically ill 17-month-old boy who grew sicker despite standard treatments. She received regulatory permission to treat him with an experimental drug, larazotide, designed to heal leaky guts. It worked.

Yonker prescribed larazotide for four other children, including Dante, who also received a drug used to treat rheumatoid arthritis. He got better.

But most kids with MIS-C get better, even without experimental drugs. Without a comparison group, there’s no way to know if larazotide really works. That’s why Yonker is enrolling 20 children in a small randomized clinical trial of larazotide, which will provide stronger evidence.

Rogue Soldiers

Dr. Moshe Arditi has also drawn connections between children’s symptoms and what might be causing them.

Although the first doctors to treat MIS-C compared it to Kawasaki disease — which also causes red eyes, rashes and high fevers — Arditi notes that MIS-C more closely resembles toxic shock syndrome, a life-threatening condition caused by particular types of strep or staph bacteria releasing toxins into the blood. Both syndromes cause high fever, gastrointestinal distress, heart muscle dysfunction, plummeting blood pressure and neurological symptoms, such as headache and confusion.

Toxic shock can occur after childbirth or a wound infection, although the best-known cases occurred in the 1970s and ’80s in women who used a type of tampon no longer in use.

Toxins released by these bacteria can trigger a massive overreaction from key immune system fighters called T cells, which coordinate the immune system’s response, said Arditi, director of the pediatric infectious diseases division at Cedars-Sinai Medical Center.

T cells are tremendously powerful, so the body normally activates them in precise and controlled ways, Bassiri said. One of the most important lessons T cells need to learn is to target specific bad guys and leave civilians alone. In fact, a healthy immune system normally destroys many T cells that can’t distinguish between germs and healthy tissue in order to prevent autoimmune disease.

In a typical response to a foreign substance — known as an antigen — the immune system activates only about 0.01% of all T cells, Arditi said.

Toxins produced by certain viruses and the bacteria that cause toxic shock, however, contain “superantigens,” which bypass the body’s normal safeguards and attach directly to T cells. That allows superantigens to activate 20% to 30% of T cells at once, generating a dangerous swarm of white blood cells and inflammatory proteins called cytokines, Arditi said.

This massive inflammatory response causes damage throughout the body, from the heart to the blood vessels to the kidneys.

Although multiple studies have found that children with MIS-C have fewer total T cells than normal, Arditi’s team has found an explosive increase in a subtype of T cells capable of interacting with a superantigen.

Several independent research groups — including researchers at Yale School of Medicine, the National Institutes of Health and France’s University of Lyon — have confirmed Arditi’s findings, suggesting that something, most likely a superantigen, caused a huge increase in this T cell subtype.

Although Arditi has proposed that parts of the coronavirus spike protein could act like a superantigen, other scientists say the superantigen could come from other microbes, such as bacteria.

“People are now urgently looking for the source of the superantigen,” said Dr. Carrie Lucas, an assistant professor of immunobiology at Yale, whose team has identified changes in immune cells and proteins in the blood of children with MIS-C.

Uncertain Futures

One month after Dante left the hospital, doctors examined his heart with an echocardiogram to see if he had lingering damage.

To his mother’s relief, his heart had returned to normal.

Today, Dante is an energetic 10-year-old who has resumed playing hockey and baseball, swimming and rollerblading.

“He’s back to all these activities,” said DeMaino, noting that Dante’s doctors rechecked his heart six months after his illness and will check again after a year.

Like Dante, most other kids who survive MIS-C appear to recover fully, according to a March study in JAMA.

Such rapid recoveries suggest that MIS-C-related cardiovascular problems result from “severe inflammation and acute stress” rather than underlying heart disease, according to the authors of the study, called Overcoming COVID-19.

Although children who survive Kawasaki disease have a higher risk of long-term heart problems, doctors don’t know how MIS-C survivors will fare.

The NIH and Centers for Disease Control and Prevention have launched several long-term trials to study young covid patients and survivors. Researchers will study children’s immune systems to uncover clues to the cause of MIS-C, check their hearts for signs of long-term damage and monitor their health over time.

DeMaino said she remains far more worried about Dante’s health than he is.

“He doesn’t have a care in the world,” she said. “I was worried about the latest cardiology appointment, but he said, ‘Mom, I don’t have any problems breathing. I feel totally fine.’”

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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California’s Mental Health Crisis: What Went Wrong? And Can We Fix It?

Wed, 10/20/2021 - 5:00am

Gov. Gavin Newsom is steering a major transformation of California’s behavioral health care system, with much at stake in the years ahead. On Oct. 6, the Sacramento-based publication Capitol Weekly invited KHN’s Angela Hart to moderate an expert panel tackling the origins of the state’s broken system and potential solutions ahead.

The lively discussion featured health care leaders with deep experience in the political, provider and research aspects of mental health and addiction. The panelists were Dr. Elaine Batchlor, CEO of MLK Community Healthcare; former state Sen. Jim Beall, a Santa Clara County Democrat who spearheaded mental health legislation during his tenure in the legislature; Michelle Doty Cabrera, executive director of the County Behavioral Health Directors Association of California; and Janet Coffman, a researcher and faculty member with Healthforce Center at the University of California-San Francisco.

The discussion illuminated challenges that arise when the state puts insurance companies in charge of delivering critical health services, while also providing an overview of the ambitious policy changes the Newsom administration is pushing.

Click here to find a podcast of the full event. Hart hosts the first of three panels.

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Niños con discapacidades enfrentan retos especiales por covid al regresar a la escuela

Tue, 10/19/2021 - 1:52pm

Christopher Manzo, un niño de pelo castaño rizado y lentes de color azul y amarillo brillante, ha pasado un tercio de sus cinco años en casa a causa de la pandemia. Y está más que preparado para el jardín infantil.

De la mano de su madre, Martha Manzo, entra en el Blind Children’s Center (Centro de Niños Ciegos), un edificio bajo enclavado entre edificios de apartamentos en East Hollywood. En el pasillo de colores brillantes, lleno de pinturas de animales, Manzo se arrodilla para abrazar a Christopher antes de que vaya a su cubículo.

“Que Dios te proteja y te acompañe”, le dice. “Y que disfrutes”.

Christopher nació con una hidrocefalia congénita que le dañó el cerebro y lo dejó con una visión muy deteriorada, dificultades cognitivas y falta de coordinación. El niño no sólo ha perdido 18 meses de escuela, sino también una serie de terapias ocupacionales, físicas y de lenguaje vitales, así como la socialización con otros niños.

En casa, Christopher no podía mirar la pantalla de la computadora el tiempo suficiente para asistir a las terapias o a las clases a través de Zoom, explicó Manzo durante una entrevista. “Esforzaba la vista, miraba hacia otro lado y su atención flaqueaba”, dijo. “No podía dedicar la misma atención que un niño sin discapacidad”.

Christopher “podría haber avanzado mucho más” desde la llegada de la pandemia si no hubiera faltado tanto a la escuela, aseguró Manzo, que tiene 36 años y tres hijos más, de 12, 10 y 8 años, a los que también ha tenido que guiar durante meses de escolarización en casa.

Sin embargo, el regreso a la escuela plantea problemas de salud particulares para Christopher y otros niños con discapacidades, que corren un mayor riesgo de sufrir formas graves de covid, señaló su pediatra en el Hospital Infantil de Los Angeles, la doctora Liza Mackintosh.

Aunque no está inmunodeprimido, Christopher tiene problemas para toser las secreciones, lo que le hace vulnerable a las infecciones pulmonares y respiratorias, apuntó Mackintosh.

En comparación con otros adultos que están en contacto con menores, sus padres, profesores y terapeutas “tienen que estar más atentos al uso de máscaras, a la higiene de las manos y al distanciamiento social”, añadió.

Por eso, Manzo estaba muy preocupada por la amenaza de exposición a covid a la que se enfrentaba Christopher en la escuela. Pero se dio cuenta que era un riesgo que su hijo no podía seguir evitando, para seguir adelante con su vida.

Intentar aprender desde casa fue “realmente duro para él”, contó Manzo. “No entendía por qué no podía ir al colegio, al parque o a sus terapias”.

“Sé que covid sigue entre nosotros, pero tampoco puedo mantenerlo en casa como si estuviera en una burbuja de cristal y protegerlo”, dijo. “Necesita el contacto con otros niños y con sus profesores”.

Los retos a los que se enfrentó Christopher durante la pandemia han sido compartidos por muchos de los cerca de 7 millones de niños y jóvenes estadounidenses, de 3 a 21 años, con necesidades especiales. Las plataformas en línea no suelen funcionar para ellos. Por ejemplo, Christopher necesita palpar las letras en braille para leer; no puede hacerlo en una pantalla de computadora.

Los estudiantes con discapacidades tuvieron “una especie de doble reto en el que era muy difícil acceder a los servicios de la escuela y muy difícil seguir trabajando en el desarrollo de nuevas habilidades”, señaló la doctora Irene Koolwijk, especialista en pediatría del desarrollo-conductual en UCLA Health.

Se necesitaron muchos preparativos para que Christopher, y los otros 40 niños que asisten al Centro de Niños Ciegos, volvieran a entrar en el edificio de la escuela privada para niños pequeños.

Todos los niños son ciegos o tienen deficiencias visuales, y la mayoría de ellos padecen también trastornos que van desde el autismo y el albinismo hasta la parálisis cerebral y la epilepsia. La escuela practica la integración inversa, en la que unos pocos niños con desarrollo típico comparten el aula con niños con discapacidades.

Meses antes de que se reabrieran las puertas de la escuela, el centro empezó a enseñar a los alumnos a llevar máscaras.

“Poco a poco, empezamos a enseñarle a los niños a llevar máscaras por Zoom. Empezamos con la duración de una canción, luego dos canciones”, dijo Rosalinda Mendiola, especialista en servicios de adaptación del Centro de Niños Ciegos. “Nuestro objetivo era que, cuando volviéramos a abrir, ya estuvieran acostumbrados a ellas”.

Pero fue difícil. A muchos niños con necesidades especiales les cuesta ponerse los cubrebocas y entender el concepto de distanciamiento, apuntó Mackintosh. Los niños con algunas formas de autismo, en particular, tienen problemas sensoriales y les moleste tener algo en la cara.

“Los niños son los que más aprenden siguiendo el ejemplo de los demás. Observan a sus padres, a sus profesores, a sus amigos”, comentó Bianca Ciebrant, directora de educación infantil del centro. “Pero los niños con deficiencias visuales y ciegos no pueden ver el uso de la mascarilla. Esa probablemente sea una de las mayores dificultades”.

Christopher tardó siete meses en empezar a usar una máscara. “Al principio, ni siquiera la quería delante de su cara”, contó Manzo. “Empezó a aceptarla, poco a poco, cuando vio que sus hermanos la llevaban”.

Para la reapertura en septiembre, la escuela también adoptó nuevos protocolos de seguridad contra covid. Los 30 miembros del personal están vacunados, se comprueba la temperatura al dejar a los alumnos y no se permite a los padres entrar en las aulas.

Todos los alumnos llevan máscaras, excepto tres de ellos que tienen una capacidad motriz limitada y no podrían quitarse una mascarilla de forma segura o no entienden el proceso, “y, por lo tanto, implica una sobrecarga sensorial y un colapso del comportamiento”, señaló Ciebrant.

Hay seis niños en cada clase, supervisados por un profesor y dos asistentes. Christopher necesita que alguien esté cerca de él para recordarle por dónde tiene que caminar y que se agarre a la barandilla para mantener el equilibrio.

Con tanto personal, “crear un escudo de personas vacunadas alrededor del niño es importante para que la transición de vuelta a la escuela sea lo más segura posible”, aseguró la doctora Christine Bottrell Mirzaian, pediatra del Hospital Infantil de Los Angeles.

Martha y su marido, Fausto Manzo, se vacunaron en marzo, y su hija de 12 años, Samantha, también ha sido inmunizada contra covid.

“Nuestra salud es importante para poder seguir cuidando de Christopher”, dijo Martha Manzo.

Un miércoles reciente, Christopher llevó al colegio una mascarilla de un oso de peluche y una mochila de Ryan’s World. Este es su último año en el centro. Cuando empezó, tenía 2 años y aún no había aprendido a caminar. “Ha recibido mucha ayuda”, explicó Manzo. “Sus movimientos y capacidad de comunicación han mejorado”.

Christopher se pasea por el patio durante el recreo y saluda a sus amigos con la mano. “No tiene equilibrio, pero ya camina”, dijo su madre. “Siempre quise verlo correr y explorar”.

El personal de la escuela se alegró de tener a sus alumnos de regreso.

“Todos sentimos una enorme alegría en nuestro corazón al escuchar sus voces de vuelta en los pasillos, ya sea llorando o riendo o hablando con sus amigos”, comentó Ciebrant. “Esto es lo que hemos estado esperando, poder escuchar esos momentos”.

Esta historia fue producida por KHN, que publica California Healthline, un programa editorialmente independiente de la California Health Care Foundation.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Hygienists Brace for Pitched Battles With Dentists in Fights Over Practice Laws

Tue, 10/19/2021 - 5:00am

This year, the Illinois legislature was considering measures to expand oral health treatment in a state where millions of people live in dental care deserts.

But when the Illinois State Dental Society met with key lawmakers virtually for its annual lobbying day in the spring, the proposals to allow dental hygienists to clean the teeth of certain underprivileged patients without a dentist seemed doomed.

State Sen. Dave Syverson, a Republican legislative leader, warned against the bills even if they sounded minor. “It’s just getting the camel’s nose under the tent,” he said in an audio recording of the meeting obtained by KHN. “We’ll have, before long, hygienists doing the work that, if they wanted to do, they should have gone to dental school for.”

The senator added that he missed “the reception and the dinners that you guys host” and the “nice softball questions that I usually get” from the dental society’s past president, who happens to be his first cousin.

The bills never made it out of committee.

The situation in Illinois is indicative of the types of legislative dynamics that play out when lower-level health care providers such as dental hygienists, nurse practitioners and optometrists try to gain greater autonomy and access to patients. And the fate of those Illinois bills illustrates the power that lobbying groups such as the Illinois dental society have in shaping policies on where health professionals can practice and who keeps the profits.

“There’s always a struggle,” said Margaret Langelier, a researcher for the Center for Health Workforce Studies at the University of Albany in New York. “We have orthopedists fighting podiatrists over who can take care of the ankle. We have psychiatrists fighting with clinical psychologists about who can prescribe and what they can prescribe. We have nurses fighting pharmacists over injections and vaccinations. It’s the turf battles.”

In 2015, the Illinois Dental Practice Act was revised to let hygienists treat low-income patients on Medicaid or without insurance in “public health settings” — such as schools, safety-net clinics and programs for mothers and children — without a dentist examining them or being on-site. Besides doing cleanings, the hygienists can take X-rays, place sealants and apply fluoride.

This year, lawmakers proposed bills that would have expanded those settings to include nursing homes, prisons and mobile dental vans.

The state dental society, in a memo to members, wrote that the fact it took years for hygienists to develop their public health training program shows “they have no real interest in providing access to care to needy patients.”

As it is, Illinois trails many other states in allowing dental hygienists unsupervised contact with patients. In Colorado, on the extreme end, hygienists can own practices.

“It’s just the nature of the beast politically in Illinois. The dental lobby isn’t as strong in those other states,” noted Margaret Vaughn, executive director of the Illinois Rural Health Association. “The Illinois State Dental Society is much more powerful, and they’re much more organized than the hygienists are politically.”

From 2015 to 2019, the dental society spent more than $55,000 on lobbying, for its annual gathering and meals for lawmakers, typically hosted at a swanky Italian spot near the state Capitol in Springfield, according to public disclosures. In the same period, the Illinois Dental Hygienists Association reported spending nothing in its lobbying reports. (Neither group has listed any expenditures since the beginning of 2020.)

The dental society has two exclusive lobbyists and four lobbying firms on contract, state records show. The hygienist group, meanwhile, employs no lobbyists and contracts with just one firm.

The dental society donates generously to both Republicans and Democrats. Its political action committee had nearly $742,000 in cash on hand as of June 30, according to Reform for Illinois’ Sunshine Database. While the PAC has given $4,050 since 2014 to support the campaigns of state Sen. Melinda Bush, a Democrat who sponsored the nursing home bill, the database shows it has contributed far more to help elect Syverson, the senator who spoke at the conference. It has given more than $123,000 to his campaigns since 1999, with bigger annual gifts than to Bush.

“I receive contributions from many groups on both sides of issues,” Syverson emailed KHN. “They are not contributing to influence my vote on a particular bill. In fact, if a PAC sent a check while we were negotiating or voting on an issue they are involved with, I would not accept it.”

The hygienists’ PAC gave $1,100 to the campaign committee of Bush, according to the database, but nothing to Syverson. Bush did not respond to requests for comment.

“The bottom line is, if you don’t have a healthy mouth, you don’t have a healthy body,” said Ann Lynch, director of advocacy and education for the American Dental Hygienists Association. “It only makes sense that we would remove any barriers that do not allow a licensed health care provider to practice at the top of their scope.”

But Dave Marsh, a lobbyist for the Illinois dental society, said it would be dangerous for hygienists to treat nursing home residents, who are often elderly and sick.

“I just don’t feel anybody with a two-year associate’s degree is medically qualified to correct your health,” Marsh added. “They’re trained to clean teeth. They take a sharp little instrument and scrape your teeth. That’s what they do. That’s all they do.”

He said the problem is not a shortage of dental professionals but, rather, a lack of dentists who can afford to accept Medicaid patients — and “nobody wants to raise taxes to actually be able to reimburse” dentists at higher rates.

He also pointed to the scarcity of research on the benefits of dental hygienists having more professional freedom.

Langelier acknowledged that little academic literature exists on this topic, in part because of inadequate data collection on oral health. But in 2016, a study she co-authored in Health Affairs found that, as dental hygienists gained more autonomy, fewer people had teeth removed because of decay or disease. And she said Medicaid data shows more children had dental visits as hygienists expanded their practice.

“I don’t want this to be acrimonious,” said Laura Scully, chair of the access-to-care committee of the state hygienists association. “I would like it to be more of a collaboration, because truly that’s what this is about: getting together so we can help more people.”

Karen Webster works as a dental hygienist for the Tri City Health Partnership, a free clinic in St. Charles, Illinois, about 40 miles west of Chicago. In the past, she could only briefly screen patients before scheduling them with one of the center’s volunteer dentists, often months out.

“Imagine if you had a toothache and the doctor couldn’t see you that day,” she said, noting that her patients have low incomes. “They can’t afford the services. They wait till something hurts.”

But since becoming a public health dental hygienist, Webster now does immediate cleanings, takes X-rays she sends to teledentists for exams, and applies a solution called silver diamine fluoride that can halt tooth decay.

“The whole thing, start to finish, it’s just a lot more efficient,” she said.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Children With Disabilities Face Special Back-to-School Challenges

Tue, 10/19/2021 - 5:00am

LOS ANGELES — Christopher Manzo, a boy with curly brown hair and bright-blue-and-yellow glasses, has lived a third of his five years at home because of the pandemic.

And he is more than ready for kindergarten.

Hand in hand with his mother, Martha Manzo, he walks into the Blind Children’s Center, a low-rise building nestled among apartment complexes in East Hollywood. In the brightly colored hallway, filled with paintings of animals, Manzo kneels to hug Christopher before he scurries unsteadily to his cubby.

“God take care of you and be with you,” she says. “And have fun.”

Born with congenital hydrocephalus that damaged his brain and left him with severely impaired vision, cognitive difficulties and a lack of coordination, Christopher hasn’t missed only school the past 18 months — he’s missed out on a host of vital occupational, physical and language therapies, as well as socialization with other kids.

At home, Christopher couldn’t look at a computer screen long enough to attend therapies or classes on Zoom, said Manzo, in an interview conducted in Spanish. “He would strain his eyes, look away, and his attention would falter,” she said. “He couldn’t devote the same attention as a kid without disabilities.’’

Christopher “could have advanced much more” since the pandemic hit if he hadn’t missed so much school, said Manzo, who is 36 and has three other children, ages 12, 10 and 8, whom she also has had to guide through months of home-schooling.

Yet the return to school raises particular health issues for Christopher and other children with disabilities who are at increased risk for serious bouts of covid-19, said his pediatrician at Children’s Hospital Los Angeles, Dr. Liza Mackintosh. Though he isn’t immunosuppressed, Christopher has trouble coughing up secretions, which leaves him vulnerable to lung and respiratory infections, she said.

Compared with other adults in contact with children, his parents, teachers and therapists “have to be more vigilant about mask-wearing, hand hygiene and social distancing,” she said.

In short, Manzo was deeply worried about the threat of covid exposure Christopher faced at school. But it was a risk she felt he could no longer avoid, to get on with his life.

Trying to learn from home was “really hard on him,” Manzo said. “He couldn’t understand why he couldn’t go to school or the park or to his therapies.”

“I know covid is still among us, but I also can’t keep him at home like he’s a crystal bubble and protect him,” she said. “He needs contact with other kids and his teachers.”

The challenges faced by Christopher during the pandemic have been shared by many of the roughly 7 million U.S. children and young adults, ages 3 to 21, with special needs. Online platforms usually don’t work for them. For example, Christopher needs to feel Braille letters to read — he can’t do that on a computer screen.

Students with disabilities had “sort of this double hit where it was very hard to access school services and very challenging to continue to work on developing new skills,” said Dr. Irene Koolwijk, a specialist in developmental-behavioral pediatrics at UCLA Health.

It took a lot of preparation to get Christopher and the 40 or so other children attending the Blind Children’s Center back into the building of the private, infant-to-kindergarten school. All the children are blind or visually impaired, and most also have disorders ranging from autism and albinism to cerebral palsy and epilepsy. The school practices reverse mainstreaming, in which a few children with typical development share the classroom with children with disabilities.

Months before the school doors reopened, the center started teaching the students about wearing masks.

“Little by little, we started training the kids to wear masks on Zoom. It started off with the duration of a song, then two songs,” said Rosalinda Mendiola, adaptive services specialist at the Blind Children’s Center. “Our goal was that by the time we opened back up, they would be used to them.”

But it was difficult. Many children with special needs have a hard time wearing their masks and understanding the concept of distancing, said Mackintosh. Children with some forms of autism, in particular, have sensory issues that make it bothersome to have something on their faces.

“Children learn the most from modeling. They watch their parents, their teachers, their friends,” said Bianca Ciebrant, the center’s director of early childhood education. “But children who are visually impaired and blind can’t see the mask-wearing. That’s probably one of the harder barriers.”

It took Christopher seven months to start wearing a mask. “At first, he didn’t even want it in front of his face,” said Manzo. “He started to slowly accept it when he saw his siblings wear it.”

To reopen in September, the school also adopted new covid safety protocols. All 30 staff members are vaccinated, temperature checks are performed at drop-off, and parents aren’t allowed inside classrooms.

All students wear masks except for three of them who have limited motor ability and couldn’t safely remove a mask or don’t understand the mask-wearing process “and therefore it becomes sensory overload and behavior breakdown,” Ciebrant said.

There are six kids in each class, overseen by a teacher and two assistants. Christopher needs someone near him to remind him where to walk and to hold on to the banister for balance.

With so many staffers around, “creating a shield of vaccinated individuals around the child is important to making the transition back to school as safe as possible,” said Dr. Christine Bottrell Mirzaian, a pediatrician at Children’s Hospital Los Angeles.

Martha and her husband, Fausto Manzo, were vaccinated last March, and their 12-year-old daughter, Samantha, also has been immunized against covid.

“Our health is important to be able to continue taking care of him,” Martha Manzo said.

On a recent Wednesday, Christopher wore a teddy bear mask and a Ryan’s World backpack to school. This is his last year at the center. When he started, he was only 2 and hadn’t learned to walk.

“He has received a lot of help,” Manzo said. “His movements have improved, and his communication skills.”

Christopher toddles around the playground during recess and greets his friends with a wave. “His balance is off, but he’s walking now,” his mother said. “I always wanted to see him run and explore.”

School staff members were happy to have their students back.

“We all felt this little warmth in our heart to hear their voices back in the hallway, whether it was crying or laughing or talking to their friends,” said Ciebrant. “This is what we’ve been waiting for, to hear those moments.”

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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La pandemia obligó a mi esposa transgénero a pelear con nuestra aseguradora por las hormonas

Mon, 10/18/2021 - 2:23pm

GUNNISON, Colorado – Durante los últimos ocho años, mi esposa, Ky Hamilton, se ha sometido a una terapia hormonal que reafirma el género. Como mujer transgénero, se inyecta estrógeno líquido Depo-Estradiol en el muslo una vez a la semana. Este medicamento le ha permitido hacer una transición física a ser mujer, y cada vial, que dura alrededor de cinco semanas, estaba completamente cubierto por el seguro.

Esto fue hasta que perdió su trabajo en abril de 2020 y cambiamos a un plan médico privado subsidiado en el mercado de seguros de Colorado, establecido por la Ley de Cuidado de Salud a Bajo Precio (ACA).

Descubrimos que nuestro nuevo seguro de Anthem no cubre el Depo-Estradiol y que el gasto de bolsillo por vial sería de $125. Con nosotras, y nuestras cuatro mascotas, dependiendo en gran medida del cheque de desempleo semanal de $649 de Ky, estos gastos médicos resultaron difíciles.

Y a partir del 6 de septiembre, esos cheques de desempleo se agotaron.

“Estoy absolutamente estresada. No sé qué hacer “, dijo Ky en agosto mientras intentábamos encontrar una solución.

Debido a la transición física de Ky como mujer transgénero, su cuerpo no produce la testosterona que solía producir. Entonces, sin la medicación, esencialmente atravesaría la menopausia. Una disminución en los niveles de estrógeno también puede hacer que las mujeres transgénero pierdan las transiciones físicas que han logrado, lo que resulta en disforia de género, que es una angustia psicológica por el desajuste entre su sexo biológico y su identidad de género.

Desafortunadamente, muchas otras estadounidenses transgénero comparten la experiencia de Ky. La pandemia de covid-19 ha provocado que millones de personas pierdan su trabajo y su seguro médico privado, en particular los adultos LGBTQ, quienes han reportado quedarse sin empleo en tasas más altas durante esta crisis que los que no lo son.  

En consecuencia, la inscripción aumentó en los planes de ACA y en Medicaid, el programa de salud estatal-federal para personas de bajos ingresos. Sin embargo, muchas de estas pólizas no cubren por completo la atención que afirma el género, en parte debido a las políticas conservadoras y a la falta de investigación científica sobre cuán crucial es esta atención para los pacientes transgénero.

Según una encuesta de Out2Enroll, una iniciativa nacional para conectar a las personas LGBTQ con la cobertura de ACA, el 46% de los 1,386 planes de Plata del mercado encuestados cubren todo o parte del tratamiento médicamente necesario para la disforia de género. Sin embargo, el 7% tiene exclusiones específicas para personas trans, el 14% tiene algunas exclusiones y el 33% no especifica.

“Es esta situación en la cual los planes en su mayor parte no tienen exclusiones generales, pero las personas todavía tienen dificultades para cubrir procedimientos específicos, medicamentos, etc.”, dijo Kellan Baker, director ejecutivo de Whitman- Walker Institute, una organización sin fines de lucro que se centra en la investigación, las políticas y la educación LGBTQ.

Veintitrés estados y Washington, D.C., incluyen atención de afirmación de género en sus planes de Medicaid. Pero 10 estados excluyen por completo esta cobertura. En 2019, un estimado de 152,000 adultos transgénero se inscribieron en Medicaid, un número que probablemente ha aumentado durante la pandemia.

Sin embargo, incluso en estados como California que requieren que sus programas de Medicaid cubran la atención de afirmación de género, los pacientes todavía luchan por obtener estrógeno inyectable, dijo la doctora Amy Weimer, internista que fundó el Programa de Salud de Género de UCLA. Si bien el Medi-Cal, el programa de Medicaid del estado, cubre el Depo-Estradiol, los médicos deben solicitar autorizaciones de tratamiento para demostrar que sus pacientes necesitan el medicamento. Weiner dijo que rara vez se aprueban.

Estas “autorizaciones previas” son un problema en los planes de Medicaid y ACA para medicamentos que incluyen estrógeno y testosterona inyectables, que utilizan los hombres transgénero, explicó Baker.

La falta de cobertura de fácil acceso puede reflejar el hecho de que el estrógeno inyectable, que proporciona las altas dosis de la hormona necesaria para que las mujeres transgénero hagan la transición física, no es comúnmente utilizado por mujeres no trans que se someten a terapia hormonal para tratar la menopausia u otros problemas, dijo Weimer.

También puede deberse a que existen opciones más baratas, incluidas las píldoras de estrógeno diarias, pero aumentan el riesgo de coágulos de sangre. Los parches de estrógeno liberan la hormona a través de la piel, pero pueden causar reacciones cutáneas, y muchas personas luchan por absorber suficiente estrógeno, dijo Weimer. Por eso, muchos de los pacientes de Weimer usan hasta cuatro parches a la vez, pero Medi-Cal limita la cantidad de parches que los pacientes pueden recibir mensualmente.

Si bien tales brechas en los seguros han existido desde mucho antes de la pandemia, la crisis actual parece haber amplificado el tema, según Weimer.

ACA prohíbe la discriminación por motivos de raza, color, país de origen, edad, discapacidad y sexo en los programas y actividades de salud que reciben asistencia financiera federal. La administración Trump redujo significativamente el poder de esa disposición, incluyendo la eliminación de las protecciones del seguro médico para las personas transgénero.

Sin embargo, en junio de 2020, antes de que las regulaciones de Trump pudieran entrar en vigencia, la Corte Suprema dictaminó en Bostock v. Clayton County, Georgia, que la discriminación laboral basada en el sexo incluye la orientación sexual y la identidad de género.

Esta decisión histórica ha servido como una herramienta crucial para abordar la discriminación LGBTQ en muchos aspectos de la vida, incluida la atención médica. Desde julio, por ejemplo, el Medicaid en Alaska ya no puede excluir el tratamiento de afirmación de género después de que Swan Being, una mujer transgénero, ganara una demanda colectiva que se basó en parte en la decisión de Bostock.

La administración Biden anunció en mayo que la Oficina de Derechos Civiles del Departamento de Salud y Servicios Humanos (HHS) incluirá la identidad de género y la orientación sexual en su aplicación de la disposición contra la discriminación de ACA. El mes siguiente, los beneficios de salud de la Oficina de Asuntos de Veteranos se ampliaron para incluir la cirugía de confirmación de género.

Pero por ahora, la presión de luchar por sus beneficios de salud sigue recayendo en pacientes como Ky.

Tony Felts, vocero de Anthem, dijo que Depo-Estradiol no está en la lista de medicamentos cubiertos de sus planes ACA, aunque muchos de sus planes privados patrocinados por empleadores lo cubren.

Como teníamos uno de esos planes de ACA, Ky tuvo que ser persistente. Después de cuatro meses de correos electrónicos y llamadas telefónicas, y justo antes de que se agotara el dinero del desempleo, Anthem finalmente autorizó su Depo-Estradiol. Durante el próximo año, el costo de bolsillo será de $60 por vial. Todavía es caro para nosotras en este momento, pero encontraremos la manera de que funcione.

“La realidad es que las personas trans tienen más probabilidades de estar en la pobreza y no tienen el tiempo ni el conocimiento para pasar cuatro meses luchando por obtener su estradiol como yo”, dijo Ky.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Watch: Going Beyond the Script of ‘Dopesick’ and America’s Real-Life Opioid Crisis

Mon, 10/18/2021 - 5:00am

KHN and policy colleagues at our parent organization KFF teamed up with Hulu for a discussion of America’s opioid crisis, following the Oct. 13 premiere of the online streaming service’s new series “Dopesick.”

The discussion explored how the series’ writers worked with journalist Beth Macy, author of the book “Dopesick: Dealers, Doctors, and the Drug Company That Addicted America,” and showrunner Danny Strong to create and fact-check scripts and develop characters. It quickly moved on to a deeper discussion of how the fictionalized version of the opioid epidemic portrayed in the Hulu series dovetailed with the broader reality KFF’s journalists and analysts have been documenting in their work for the past few years.

Providing perspective on the role of public health and treatment were KHN correspondent Aneri Pattani, who has reported extensively on opioid policy, substance use and mental health, and KFF senior policy analyst Nirmita Panchal, whose analytical work focuses on mental health and substance use.

The forum was moderated by Chaseedaw Giles, audience engagement editor and digital strategist at KHN who has written about hip-hop music’s relationship with opioid abuse. It was filmed in KFF’s Washington, D.C., conference center to an audience of no one (courtesy of covid-19).

You can read a transcript of the forum by clicking here.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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What Will It Take to Boost Vaccinations? The Scene From Kentucky’s Back Roads

Mon, 10/18/2021 - 5:00am

SMILAX, Ky. — In the end it was the delta variant that drove Rose Mitchell, 89, down the winding mountain road to the Full Gospel Church of Jesus Christ to get the shot. Her pastor, Billy Joe Lewis, had told his congregation that, No, ma’am, a covid vaccine would not leave the “mark of the beast” nor rewrite their genetic codes.

Mitchell, who has known the deaths of eight of her 13 children over the years, was done taking chances with the virus stealing up the hollers along Cutshin Creek.

“That stuff’s getting so bad, I was afraid to not take it,” she said, sitting in her daughter’s car in the church parking lot. “I said, ‘Well, if all the rest of them are going to take it, I’ll take it too.’”

Kentucky is in the midst of a covid-19 wildfire sparing no part of the state; new case counts topped 4,000 a day for much of September, before easing somewhat this month. Hospital intensive care units are still at capacity in some regions, with covid patients occupying half the beds. Gov. Andy Beshear has called the situation “dire.”

Across the nation, older people have been steadfast takers of the covid vaccines: About 95% of people 65 and older have received at least one shot. But geographic variations cloud that math. Older Kentuckians in rural hamlets far from Louisville and Lexington are trailing in vaccination, with rates as low as 55% in Wayne County, on the Tennessee state line.

While seniors are still more likely to be vaccinated than younger adults in Kentucky, the simple truth of the pandemic is that older people who forgo the shots face a far greater chance of severe sickness and death. People 60 and older account for nearly 90% of the 9,184 covid-related deaths in Kentucky. Residents 80 and older account for 41% of deaths.

In Leslie County, in the foothills of the rugged Pine Mountain ridge that anchors the state’s eastern coalfields, gravel roads wind through thick forests blanketed with kudzu vines. House by house, church by church, public health workers are trying to outsmart the fantastical tales about the covid vaccines spread on Facebook and overcome the everyday hurdles of financial hardship and isolation.

“Some of our older people don’t have access to vehicles because their family works,” said Maxine Shepherd, a regional health coordinator for Leslie County and four-decade-long member of Full Gospel Church. Even for those with a car, gas is expensive, she said, and trips from secluded hollers to town are rationed out carefully.

While Kentuckians watched the devastating early months of the pandemic from afar, covid has long since made its arrival — and it hasn’t spared the church on Cutshin Creek. In recent weeks, Pastor Lewis held a funeral service for a 53-year-old unvaccinated former coal miner, suspended Sunday services after more members fell ill, and with heavy heart canceled Homecoming, a cherished yearly gathering of area churches that marks the fall foliage with a celebration of the gospel and shared faith.

Local health agencies have been eager to enroll churches in the all-hands-on-deck vaccination effort; older residents are more likely to attend religious services, and in communities like Smilax, ministers are trusted advisers.

Some church leaders have refrained, afraid of offending congregants in a state where distrust of government intrusion runs deep. But not Lewis, who helped build Full Gospel Church on a rare flat parcel of land in 1972 and has led it ever since. With a smooth pelt of silver hair and a luminous smile, Lewis spends long stretches of the day in prayer, and he says God told him to protect his flock.

When “Sister Maxine” from the regional health department suggested a drop-in vaccine clinic in the church parking lot, Lewis was all in favor. He promoted it from the pulpit and on the church’s must-read Facebook page.

“We’ve still got to use common sense,” he said. “Anything that can ward off suffering and death, I think, is a wonderful thing.”

***

Vexed by the slow uptake in vaccinations by some Americans, President Joe Biden has mandated shots for health care workers in facilities such as hospitals and nursing homes, as well as for federal workers and employees of large companies. While the exact timing and details of the private-sector mandates are still being hammered out, the specter of coercion outrages many Kentuckians, particularly in Appalachia, where government directives have been met with derision.

“We do not like to be shoved,” said David McKenzie, who grew up in Louisa, a once-booming coal town on the West Virginia border, and now owns the local nursing home. “We resent it, and we shove back.”

Opposition to the vaccines in Lawrence County, where the vaccination rate is 39%, is not overtly political so much as willful. “They’re fearful of ‘the Man,’” McKenzie said. “The Man could be your employer, it could be the government, it could be a newspaper reporter.” People who boasted about refusing the vaccines cannot change their minds, or “they’ll look like they’re weak, or they caved to the Man.”

In nearby Salyersville, the virulence of the delta variant has shaken some holdouts. Santana Salyers, 22, braved torrential rain to get her shot at the county health department, a one-story building on a stretch of freshly paved road. In her third trimester of pregnancy, she feared the hospital would not let her hold her newborn if she wasn’t vaccinated. Salyers works at the IGA grocery store and says to vax or not to vax comes up there almost every day. “I’m a fence-straddler,” she said. But around town, “you’re either against it or for it.”

Turnout for the Salyersville health fair was muted by the remnants of a tropical storm, but a few dozen people still showed up to get their shots. In the waiting room, vaccine takers received $25 Walmart cards and a chance to win a Fitbit or Instant Pot. The prizes were a big draw.

James Shepherd, who is both the town’s mayor and director of the Magoffin County Health Department, bemoans the county’s 44% vaccination rate: “In a small community like this, they make up their mind ‘yes’ or ‘no,’ and that’s it.” What will it take to boost vaccinations? “A miracle,” he said with an exasperated laugh.

Shepherd’s close friend Carter Conley, the beloved captain of the county rescue squad, died last month of covid, despite being vaccinated. Conley’s death has been deeply felt around town, but also has given fuel to those who see vaccination as pointless.

Doubts about the vaccines’ effectiveness extend to nursing homes in Kentucky despite the persistent correlations between nursing home outbreaks and low vaccination rates among staff.

On a mid-September weekday in Danville, a small city southwest of Lexington, residents at the Landmark of Danville Rehabilitation and Nursing Center sat on a quaint covered porch playing a game of 20 questions with the activities staff. Although 80% of the residents in the facility were fully vaccinated as of September, according to the Centers for Medicare & Medicaid, that was true for just 28% of health care personnel, who dash out and back at lunchtime ferrying takeout fast food.

A short drive away, the city’s other nursing home, the Danville Centre for Health and Rehabilitation, also had a staff vaccination rate of 28% in September, according to federal records. (A month later, staff vaccination rates at both facilities are still below 60%.)

The unprotected workforce does not faze one man who is moving his elderly father into Landmark. The man, who works as a registered nurse at the local hospital, and a family friend accompanying him did not want to give their names, but they doubt the vaccines’ efficacy.

The man’s parents were vaccinated in March but fell ill with covid in August, he said. His mother was put on a ventilator and died; his father was still in the hospital recovering and would soon be moved to the nursing home.

The facility’s low staff vaccination rate is “not necessarily pertinent,” he said, since his father would be receiving “end-of-life care.” His companion said she personally knew four people who died of covid and that two had been vaccinated and two had not. These cases, she said, “don’t get reported because they don’t fit the narrative.”

Standing on the porch amid festive fall decorations, Landmark’s administrator, Cindy Hollins, declined to discuss what might account for her staff’s low uptake and politely asked a reporter to leave.

***

In Louisa, three hours east of Danville, David McKenzie believes the high rates of vaccination among residents and staff at his Jordan Center will be a selling point. “I advertise I’m the safest nursing home in the state of Kentucky to live and work in,” he said.

McKenzie and his sister lived in the nursing home as kids; their parents opened the home and couldn’t find another house to rent when the town was overflowing with coal miners. He learned to play piano from a resident, down a few fingers from diabetes, who had once played in Duke Ellington’s band.

Last winter, covid ravaged the nursing home for months, infecting nearly every resident. An employee’s 33-year-old daughter, who didn’t want the vaccine, was buried in early September; then a former employee, who had quit to work at a hospital that didn’t require vaccination, died.

As soon as vaccines became available, McKenzie and his staff went room to room, explaining the science to residents. Only one family refused. Then he gathered the staff, many shaken by the loss of residents who were family members and friends.

Now, nearly every resident of the Jordan Center is vaccinated with three shots, and the staff vaccination rate hovers at 85%. But the holdouts keep McKenzie on edge.

“I sat over here on this front porch until 2 o’clock in the morning talking to two of the nurses that don’t want to vaccinate,” McKenzie said. “One has been here for 37 years and the other for 15 years. They’re dug in. They’re adamant.”

Testing staff members who refuse to get vaccinated falls to Misty Robertson, a registered nurse who has worked at the facility for decades. She views every interaction as a chance to educate her co-workers about why they should get the shot. “I’m not mean about it,” she said. “I say, ‘I really don’t want you to be on a vent and die.’”

Robertson’s father, who lived at the Jordan Center, died of covid in January. Her entire family is vaccinated, including her three children and her husband, who works at Walmart. Everyone except her twin sister, a receptionist for a local pediatrician. She tells Robertson covid is fake and “it’s all because of Biden.”

“I get mad,” said Robertson. She vehemently disputes the conspiracy theories circulating through the town’s social networks, but, she said with a sour laugh, that she sometimes goes too far. “I was put in Facebook jail.”

McKenzie’s public stance has made him a pariah in some quarters, too. A customer attacked him at Walmart and threatened to wait for him in the parking lot. The darkened mood has carved the town into opposing camps, and he thinks Biden’s vaccine mandates will just stiffen that divide.

Certainly, they are proving too much for some of his nursing home staffers. Many of the unvaccinated workers at the Jordan Center are on the same shift, and McKenzie fears he may lose his entire night crew.

“They told me Sunday night they were going to leave health care and work at Tractor Supply,” he said, “where they can make more money per hour.”

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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‘An Arm and a Leg’: Hello? We Spend 12 Million Hours a Week on the Phone With Insurers

Mon, 10/18/2021 - 5:00am

Can’t see the audio player? Click here to listen.

After Stanford professor Jeffrey Pfeffer got back surgery years ago, he kept a file folder labeled “Blue Shield Troubles.”

When Pfeffer got an offer to collaborate with the polling company Gallup, he suggested a study on how much time Americans spend on the phone with their health insurers. Gallup agreed.

Their finding: We spend about 12 million hours a week calling our health insurance. (They also found that, as workers, calling our health insurance companies means we’re more likely to miss work, and to be more checked-out and burned-out on the job.)

And given all that … it’s important to know as much as possible about who we’re actually on the phone with when we make those calls. Like, how do they make money? What are the incentives?

Here’s something few of us know: In many cases, the companies are not actually getting paid to provide insurance. If you get your insurance through work, your employer probably “self-insures.” (That’s true for about two-thirds of all workers, and more than 90% of people who work for companies with more than 1,000 employees.)

But it isn’t obvious if your job self-insures. You’ll have an insurance card that says Cigna or United or Aetna etc. But you’re operating in a different universe. For instance, self-funded plans are governed by federal law, so your state insurance commission can’t step in and help. And that’s just a start. 

In this episode, we start to get our bearings on that different universe. We talk to Pfeffer, to one of our favorite insurance brains, Karen Pollitz of KFF and to journalist Leslie Walker, whose reporting for the podcast “Tradeoffs” indicates that when companies are playing their role in “self-insured” setups, they can get up to some shady practices. And the employers they’re working for — even big, powerful outfits — often don’t exercise a lot of oversight or even have a lot of leverage.

Here’s a transcript for this episode.

“An Arm and a Leg” is a co-production of KHN and Public Road Productions.

To keep in touch with “An Arm and a Leg,” subscribe to the newsletter. You can also follow the show on Facebook and Twitter. And if you’ve got stories to tell about the health care system, the producers would love to hear from you.

To hear all KHN podcasts, click here.

And subscribe to “An Arm and a Leg” on Spotify, Apple Podcasts, StitcherPocket Casts, or wherever you listen to podcasts.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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This story can be republished for free (details).

Categories: National News Content