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SACRAMENTO – Cuando el gobernador Gavin Newsom asumió el cargo hace cuatro años, el demócrata arremetió contra los republicanos a nivel nacional ante su intento de destruir la Ley de Cuidado de Salud a Bajo Precio (ACA). La clave para su ambicioso programa de salud era restablecer la multa a los californianos sin cobertura sanitaria, que se había eliminado a nivel federal.

Era una propuesta difícil de vender para un nuevo gobernador, y Newsom necesitaba aliados fuertes entre los líderes demócratas del estado, que en aquel momento, en 2019, expresaron su preocupación por la imposición de un nuevo impuesto a los californianos que no podían permitirse el creciente costo de la atención de salud.

Los demócratas que, entonces como ahora, controlaban la legislatura estatal, finalmente apoyaron a Newsom a cambio de una promesa: el estado cobraría la multa pero usaría ese dinero para ayudar con los gastos de bolsillo de los californianos que compraran un seguro de salud en el mercado de seguros de salud estatal, Covered California.

Pero Newsom, ahora en su segundo mandato, se ha retractado de esa promesa. Su administración se aferra a los ingresos recaudados por el llamado “mandato individual”, el requisito de que hay que tener cobertura sanitaria o pagar una multa. Y su presupuesto para el próximo año fiscal, que comienza el 1 de julio y se está debatiendo en la legislatura estatal, canaliza el dinero al fondo general del estado.

Esto ha enfurecido a sus colegas demócratas, que lo acusan de romper una promesa, y de no tener en cuenta a los millones de californianos que no pueden pagar deducibles y copagos.

California comenzó a multar a los no asegurados en 2020, recaudando un estimado de $1,1 mil millones en los primeros tres años, y la administración Newsom proyecta que agregará más de $700 millones en los próximos dos años, elevando el total proyectado de cinco años a $1,8 mil millones, según el Departamento de Finanzas del estado.

Los líderes demócratas dijeron que la táctica de Newsom de retener el dinero para el fondo general es una “estafa”.

“El dinero del mandato debe dedicarse a la salud”, dijo el presidente “pro tempore” del Senado Toni Atkins a KFF Health News, argumentando que el estado debería distribuir el dinero ahora para ayudar a las personas a pagar la cobertura de salud. “No sé qué estamos esperando. Tenemos que encontrar una manera de hacer que la atención médica sea más accesible, y no hay duda de que el costo del seguro de salud es una barrera”.

Se espera que los legisladores demócratas sigan presionando a Newsom con la esperanza de llegar a un acuerdo, antes de la fecha límite del 15 de junio, para aprobar un proyecto de ley presupuestario. “Siempre pensamos que el dinero se destinaría a reducir los costos de seguro”, señaló el miembro demócrata de la Asamblea Phil Ting, presidente del Comité de Presupuesto.

En 2019, Newsom hizo campaña por el mandato individual ante el aumento de las primas de seguro, prometiendo reducir los costos de atención médica de los consumidores de Covered California mientras se diferenciaba del entonces presidente Donald Trump, que calificaba el mandato de injusto.

Los republicanos del Congreso habían retirado la penalización federal —parte de ACA— en 2017. Newsom argumentó que todavía funcionaría en California para reducir los costos de atención médica, y para alcanzar su objetivo de atención médica universal, la pieza central de su ambiciosa agenda de salud.

Newsom argumenta ahora que los subsidios federales para el seguro médico que compensan el costo de las primas mensuales son suficientes. Y, ante un déficit presupuestario estatal previsto de $32,000 millones, Newsom afirma que California no puede permitirse gastar el dinero y reducir aún más los gastos de bolsillo.

Argumenta, por ejemplo, que gastar el dinero para recortar deducibles (la cantidad que pagas por la cobertura antes de que tu seguro empiece a pagar), sería “insostenible”. Su propuesta mantendría el dinero para el fondo general del estado, y se utilizaría en lo que California necesite.

Pero los activistas de la salud que presionaron a favor de la multa, así como muchos legisladores demócratas, dicen que los fondos podrían salvar vidas y deberían distribuirse ahora.

“El mandato individual no estaba destinado a crear fondos para otros programas gubernamentales que no fueran la atención de salud”, explicó el miembro demócrata de la Asamblea Jim Wood, de Santa Rosa, presidente del Comité de Salud, en una acalorada audiencia sobre el presupuesto esta primavera. “La clara intención de la legislatura era que este dinero se destinara a la asequibilidad”.

Wood dijo que habría rechazado el plan de Newsom si hubiera sabido que los ingresos que generara se depositarían directamente en el fondo general. “No creo que lo hubiera apoyado”, dijo. “Me parece una violación de lo que pensábamos que estábamos haciendo”.

El aumento de los gastos de salud, por ejemplo en primas de seguros y deducibles, está llevando a que las personas renuncien a la atención médica. En California, un asombroso 52% de los residentes afirma haber renunciado o retrasado un tratamiento en el último año por motivos económicos, según una encuesta reciente de la organización sin fines de lucro California Health Care Foundation. (California Healthline es un servicio editorial independiente de la California Health Care Foundation).

Diana Douglas, cabildera de Health Access California, que formó parte de la coalición que respaldó el mandato de cobertura del estado en 2019, señaló que Newsom debe reconocer el aumento de los costos y gastar el dinero ahora en ayudar al acceso a la salud. “Este dinero de la multa debe usarse para ayudar a los californianos a pagar la cobertura y la atención”.

Los planes de seguro de salud ofrecidos por Covered California siguen encareciéndose. Los deducibles para un plan de seguro de nivel medio, por ejemplo, subirán a $5,400 el próximo año, según Covered California, frente a los $4,750 de este año y los $3,700 de hace dos años.

Muchos californianos que compran cobertura también posponen el tratamiento ante los altos costos. Una encuesta realizada por Covered California en 2022 reveló que el 48% de sus consumidores aplazaron atención médica importante debido al precio.

Newsom esquivó esta primavera una pregunta de KFF Health News sobre las críticas a las que se enfrenta por su presión para retener el dinero del mandato, diciendo simplemente que está “orgulloso” de haber establecido el mandato de cobertura estatal y señalando que los subsidios federales a las primas están disponibles para los californianos que compran cobertura a través de Covered California.

Su administración defendió la canalización del dinero al fondo general, diciendo que los ingresos serían devueltos a un fondo especial de salud y estarían disponibles para su uso en la asistencia sanitaria con el tiempo, si el gobierno federal recortara los subsidios premium existentes.

Funcionarios de la administración argumentan que Newsom está esencialmente pidiendo prestado el dinero, diciendo que será devuelto más tarde, aunque los legisladores dudan que vaya a cumplir esa promesa.

Los críticos y algunos legisladores demócratas dicen que retener el dinero es un doble golpe para los residentes de bajos y medianos ingresos que sufren para pagar la cobertura, y argumentan que equivale a un impuesto a los pobres. “Da la sensación de que estamos intentando ahorrar a costa de nuestras comunidades de bajos ingresos”, indicó la senadora estatal demócrata Caroline Menjivar, que representa al Valle de San Fernando.

La mayoría de los que pagan la multa son californianos de ingresos bajos y medios que ganan menos del 400% del umbral federal de pobreza, que es de $58,320 para un individuo y $120,000 para una familia de cuatro miembros, según los últimos datos disponibles de la Franchise Tax Board.

Los legisladores demócratas apoyan este año una propuesta alternativa, defendida por Health Access California, para destinar los ingresos procedentes de multar a los residentes no asegurados a aumentar los subsidios de seguros de salud para las personas de ingresos bajos y medios. De este modo, se cumpliría el acuerdo que los activistas alcanzaron el año pasado con los legisladores demócratas del estado para reducir o eliminar los gastos de bolsillo en Covered California, y erradicar por completo los deducibles en un plan de nivel medio.

“Tenemos que asegurarnos de que las personas no sólo tengan cobertura de salud, sino que también puedan permitirse utilizarla”, expresó Ronald Coleman Baeza, de la Red de Salud Pan-Étnica de California.

Aunque Newsom y sus aliados demócratas han aprobado importantes ampliaciones de la cobertura, el estado no ofrece salud para todos.

Expertos dicen que más de 2,5 millones de californianos siguen sin seguro, incluidos los inmigrantes indocumentados que ganan demasiado para tener derecho a Medi-Cal, y los legisladores están cada vez más inquietos porque no todos los residentes con seguro puedan permitirse el lujo de utilizar su cobertura.

“Hubo un claro compromiso de que estos dólares se utilizarían para reducir los costos de la atención sanitaria, y no lo hemos hecho”, afirmó la miembro de la Asamblea Pilar Schiavo, representante demócrata del Valle de Santa Clarita, que presentó un proyecto de ley que exigiría que los ingresos recaudados por el mandato individual se destinaran permanentemente a la atención de salud.

Aunque la propuesta fracasó, puede ser revivida el próximo año, y los activistas aseguran que seguirán presionando a Newsom para distribuir el dinero existente entre los clientes de Covered California.

“Tenemos que cumplir nuestras promesas”, enfatizó Schiavo. “Si tienes un seguro que no puedes permitirte usar, o tienes miedo de ir a ver al médico por lo elevada que pueda ser la factura, entonces no tienes realmente acceso ni cobertura universal”.

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

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

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La enfermedad cardiovascular, la principal causa de muerte entre las personas de 65 años en adelante, se volverá más frecuente en los próximos años, afectando de manera desproporcionada a las comunidades hispana y afroamericana, y cobrando un enorme precio en la salud y la calidad de vida de los estadounidenses mayores.

Las estimaciones son desalentadoras: para 2060, se prevé que la prevalencia de la cardiopatía isquémica (una afección provocada por el bloqueo de las arterias y también conocida como enfermedad de las arterias coronarias) aumente un 31% en comparación con 2025; la insuficiencia cardíaca un 33%; los infartos un 30%; y los accidentes cerebrovasculares un 34 %, según un equipo de investigadores de Harvard y otras instituciones.

El mayor aumento se producirá entre 2025 y 2030, pronosticaron.

El dramático envejecimiento de la población de Estados Unidos y el número creciente de personas con afecciones como hipertensión, diabetes y obesidad —que aumentan el riesgo cardíaco— se espera que contribuyan a este escenario alarmante.

Debido a que estos factores de riesgo son más comunes entre las poblaciones hispana y afroamericana, probablemente haya más enfermedad cardíaca y muerte en estos grupos, predijeron los investigadores. (Los hispanos pueden ser de cualquier raza o combinación de razas).

“Las disparidades en la carga de la enfermedad cardiovascular solo se exacerbará” a menos que se realicen esfuerzos específicos para fortalecer la educación en salud, ampliar la prevención y mejorar el acceso a terapias efectivas, escribieron los autores de un editorial adjunto, de la Universidad de Stony Brook en Nueva York y el Centro Médico de la Universidad de Baylor en Texas.

“Cualquiera sea el enfoque que hayamos tenido antes sobre el manejo del riesgo de enfermedad [cardiovascular] en los estadounidenses negros e hispanos, debemos redoblar nuestros esfuerzos”, dijo Clyde Yancy, jefe de cardiología y vicedecano de diversidad e inclusión en la Facultad de Medicina Feinberg de la Universidad Northwestern de Chicago, que no participó en la investigación.

Por supuesto, los avances médicos, las políticas de salud pública y otros cambios podrían alterar las perspectivas de las enfermedades cardiovasculares en las próximas décadas.

Más del 80% de las muertes cardiovasculares ocurren entre adultos de 65 años o más. Durante más de una década, el número total de muertes cardiovasculares en este grupo de edad ha aumentado de manera constante, a medida que hay más adultos mayores.

Y el progreso previo en la reducción de las muertes por enfermedades cardíacas y accidentes cerebrovasculares se ha visto socavado por el aumento de la cintura de los estadounidenses, la mala dieta y la falta de actividad física.

Entre las personas de 65 años en adelante, las muertes cardiovasculares se redujeron un 22% entre 1999 y 2010, según datos del Instituto Nacional del Corazón, Pulmón y Sangre, gracias a nuevos tratamientos y a una fuerte disminución del tabaquismo, entre otras iniciativas de salud.

Luego, entre 2011 y 2019, las muertes aumentaron un 13%.

La pandemia de covid-19 también se ha sumado al número de muertes, ya que las infecciones por coronavirus causan complicaciones graves, como coágulos de sangre, y millones de personas mayores vulnerabes evitan buscar atención médica por temor a infectarse.

“La pandemia puso al descubierto las inequidades en salud en curso”, y eso ha impulsado una nueva ola de investigación sobre las disparidades entre varias afecciones médicas y sus causas, dijo Nakela Cook, cardióloga y directora ejecutiva del Patient-Centered Outcomes Research Institute, una organización independiente autorizada por el Congreso.

Uno de los exámenes más detallados hasta el momento, publicado en JAMA Cardiology en marzo, examinó las tasas de mortalidad en poblaciones hispanas, negras no hispanas y blancas no hispanas desde 1990 hasta 2019 en los 50 estados y el Distrito de Columbia.

Este trabajo mostró que los hombres afroamericanos siguen teniendo el mayor riesgo de morir por enfermedades cardiovasculares, especialmente en los estados del sur a lo largo del río Mississippi y en el norte del Medio Oeste.

Si bien los estilos de vida individuales son en parte responsables de la carga desigual de las enfermedades cardiovasculares, la declaración científica de 2017 de la American Heart Association (AHA) sobre la salud cardiovascular de los afroamericanos señala que la “discriminación racial percibida” y el estrés relacionado están asociados con la hipertensión, la obesidad, la inflamación persistente y otros procesos clínicos que aumentan el riesgo de enfermedad cardiovascular.

Otras minorías raciales y étnicas que experimentan adversidades en su vida cotidiana también se ven afectadas, señalaron varios expertos. Sin embargo, estudios recientes de muertes cardiovasculares no incluyen a algunos de estos grupos, incluidos los estadounidenses de origen asiático y los estadounidenses nativos.

¿Cuáles son las implicaciones para el futuro? Alain Bertoni, internista y profesor de epidemiología y prevención en la Facultad de Medicina de la Universidad de Wake Forest, señaló variaciones significativas en los resultados de salud cardiovascular según la ubicación geográfica, y dijo: “Es posible que necesitemos diferentes soluciones en diferentes partes del país”.

Gregory Roth, coautor del artículo de JAMA Cardiology y profesor asociado de cardiología en la Facultad de medicina de la Universidad de Washington, pidió un esfuerzo renovado para educar a las personas en estas comunidades vulnerables sobre los “factores de riesgo modificables”: presión arterial alta, colesterol alto, obesidad, diabetes, tabaquismo, actividad física inadecuada, dieta poco saludable y sueño insuficiente. La American Heart Association tiene sugerencias en su sitio web para promover la salud cardiovascular en cada una de estas áreas.

Michelle Albert, cardióloga y actual presidenta de la AHA, dijo que se debe prestar más atención en la educación médica a los “determinantes sociales de la salud”, incluidos los ingresos, la educación, la vivienda, los entornos del vecindario y las características de la comunidad, para que fuerza laboral de la atención sanitaria esté mejor preparada para abordar las necesidades de salud no satisfechas en las poblaciones vulnerables.

Natalie Bello, cardióloga y directora de investigación de hipertensión en el Smidt Heart Institute en el Centro Médico Cedars-Sinai en Los Ángeles, dijo: “Realmente necesitamos ir a las comunidades vulnerables y llegar a las personas en sus lugares para aumentar su conocimiento de los factores de riesgo y cómo reducirlos”.

Esto podría significar desplegar trabajadores de salud comunitarios de manera más amplia o expandir programas innovadores como los que llevan a los farmacéuticos a las barberías afroamericanas para educar sobre la presión arterial alta, sugirió.

“Ahora, más que nunca, contamos con las terapias y tecnologías médicas para tratar las afecciones cardiovasculares”, dijo Rishi Wadhera, cardiólogo y jefe de sección de política de salud e investigación de equidad en el Centro Smith para la Investigación de Resultados en Cardiología en Beth Israel Deaconess. Centro Médico de Boston.

Lo que se necesita, agregó, son esfuerzos más vigorosos para garantizar que todos los pacientes mayores, incluidos los de comunidades desfavorecidas, estén conectados con médicos de atención primaria y reciban pruebas de detección y tratamiento adecuados para los factores de riesgo cardiovascular, y atención de alta calidad basada en evidencia en el caso de insuficiencia cardíaca, un ataque al corazón o un derrame cerebral.

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

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Cardiovascular disease — the No. 1 cause of death among people 65 and older — is poised to become more prevalent in the years ahead, disproportionately affecting Black and Hispanic communities and exacting an enormous toll on the health and quality of life of older Americans.

The estimates are sobering: By 2060, the prevalence of ischemic heart disease (a condition caused by blocked arteries and also known as coronary artery disease) is projected to rise 31% compared with 2025; heart failure will increase 33%; heart attacks will grow by 30%; and strokes will increase by 34%, according to a team of researchers from Harvard and other institutions. The greatest increase will come between 2025 and 2030, they predicted.

The dramatic expansion of the U.S. aging population (cardiovascular disease is far more common in older adults than in younger people) and rising numbers of people with conditions that put them at risk of heart disease and stroke — high blood pressure, diabetes, and obesity foremost among them — are expected to contribute to this alarming scenario.

Because the risk factors are more common among Black and Hispanic populations, cardiovascular illness and death will become even more common for these groups, the researchers predicted. (Hispanic people can be of any race or combination of races.)

“Disparities in the burden of cardiovascular disease are only going to be exacerbated” unless targeted efforts are made to strengthen health education, expand prevention, and improve access to effective therapies, wrote the authors of an accompanying editorial, from Stony Brook University in New York and Baylor University Medical Center in Texas.

“Whatever focus we’ve had before on managing [cardiovascular] disease risk in Black and Hispanic Americans, we need to redouble our efforts,” said Clyde Yancy, chief of cardiology and vice dean for diversity and inclusion at Northwestern University’s Feinberg School of Medicine in Chicago, who was not involved with the research.

Of course, medical advances, public health policies, and other developments could alter the outlook for cardiovascular disease over the next several decades.

More than 80% of cardiovascular deaths occur among adults 65 or older. For about a dozen years, the total number of cardiovascular deaths in this age group has steadily ticked upward, as the ranks of older adults have expanded and previous progress in curbing fatalities from heart disease and strokes has been undermined by Americans’ expanding waistlines, poor diets, and physical inactivity.

Among people 65 and older, cardiovascular deaths plunged 22% between 1999 and 2010, according to data from the National Heart, Lung, and Blood Institute — a testament to new medical and surgical therapies and treatments and a sharp decline in smoking, among other public health initiatives. Then between 2011 and 2019, deaths climbed 13%.

The covid-19 pandemic has also added to the death toll, with coronavirus infections causing serious complications such as blood clots and millions of seniors avoiding seeking medical care out of fear of becoming infected. Most affected have been low-income individuals, and older non-Hispanic Black and Hispanic people, who have died from the virus at disproportionately higher rates than non-Hispanic white people.

“The pandemic laid bare ongoing health inequities,” and that has fueled a new wave of research into disparities across various medical conditions and their causes, said Nakela Cook, a cardiologist and executive director of the Patient-Centered Outcomes Research Institute, an independent organization authorized by Congress.

One of the most detailed examinations yet, published in JAMA Cardiology in March, examined mortality rates in Hispanic, non-Hispanic Black, and non-Hispanic white populations from 1990 to 2019 in all 50 states and the District of Columbia. It showed that Black men remain at the highest risk of dying from cardiovascular disease, especially in Southern states along the Mississippi River and in the northern Midwest. (The age-adjusted mortality rate from cardiovascular disease for Black men in 2019 was 245 per 100,000, compared with 191 per 100,000 for white men and 135 per 100,000 for Hispanic men. Results for women within each demographic were lower.)

Progress stemming deaths from cardiovascular disease in Black men slowed considerably between 2010 and 2019. Across the country, cardiovascular deaths for that group dropped 13%, far less than the 28% decline from 2000 to 2010 and 19% decline from 1990 to 2000. In the regions where Black men were most at risk, the picture was even worse: In Mississippi, for instance, deaths of Black men fell only 1% from 2010 to 2019, while in Michigan they dropped 4%. In the District of Columbia, they actually rose, by nearly 5%.

While individual lifestyles are partly responsible for the unequal burden of cardiovascular disease, the American Heart Association’s 2017 scientific statement on the cardiovascular health of African Americans notes that “perceived racial discrimination” and related stress are associated with hypertension, obesity, persistent inflammation, and other clinical processes that raise the risk of cardiovascular disease.

Though Black people are deeply affected, so are other racial and ethnic minorities who experience adversity in their day-to-day lives, several experts noted. However, recent studies of cardiovascular deaths don’t feature some of these groups, including Asian Americans and Native Americans.

What are the implications for the future? Noting significant variations in cardiovascular health outcomes by geographic location, Alain Bertoni, an internist and professor of epidemiology and prevention at Wake Forest University School of Medicine, said, “We may need different solutions in different parts of the country.”

Gregory Roth, a co-author of the JAMA Cardiology paper and an associate professor of cardiology at the University of Washington School of Medicine, called for a renewed effort to educate people in at-risk communities about “modifiable risk factors” — high blood pressure, high cholesterol, obesity, diabetes, smoking, inadequate physical activity, unhealthy diet, and insufficient sleep. The American Heart Association has suggestions on its website for promoting cardiovascular health in each of these areas.

Michelle Albert, a cardiologist and the current president of the American Heart Association, said more attention needs to be paid in medical education to “social determinants of health” — including income, education, housing, neighborhood environments, and community characteristics — so the health care workforce is better prepared to address unmet health needs in vulnerable populations.

Natalie Bello, a cardiologist and the director of hypertension research at the Smidt Heart Institute at Cedars-Sinai Medical Center in Los Angeles, said, “We really need to be going into vulnerable communities and reaching people where they’re at to increase their knowledge of risk factors and how to reduce them.” This could mean deploying community health workers more broadly or expanding innovative programs like ones that bring pharmacists into Black-owned barbershops to educate Black men about high blood pressure, she suggested.

“Now, more than ever, we have the medical therapies and technologies in place to treat cardiovascular conditions,” said Rishi Wadhera, a cardiologist and section head of health policy and equity research at the Smith Center for Outcomes Research in Cardiology at Beth Israel Deaconess Medical Center in Boston. What’s needed, he said, are more vigorous efforts to ensure all older patients, including those from disadvantaged communities, are connected with primary care physicians and receive appropriate screening and treatment for cardiovascular risk factors, and high-quality, evidence-based care in the event of heart failure, a heart attack, or a stroke.

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

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

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While physicians mostly applauded a government-appointed panel’s recommendation that women get routine mammography screening for breast cancer starting at age 40, down from 50, not everyone approves.

Some doctors and researchers who are invested in a more individualized approach to finding troublesome tumors are skeptical, raising questions about the data and the reasoning behind the U.S. Preventive Services Task Force’s about-face from its 2016 guidelines.

“The evidence isn’t compelling to start everyone at 40,” said Jeffrey Tice, a professor of medicine at the University of California-San Francisco.

Tice is part of the WISDOM study research team, which aims, in the words of breast cancer surgeon and team leader Laura Esserman, “to test smarter, not test more.” She launched the ongoing study in 2016 with the goal of tailoring screening to a woman’s risk and putting an end to the debate over when to get mammograms.

Advocates of a personalized approach stress the costs of universal screening at 40 — not in dollars, but rather in false-positive results, unnecessary biopsies, overtreatment, and anxiety.

The guidelines come from the federal Department of Health and Human Services’ U.S. Preventive Services Task Force, an independent panel of 16 volunteer medical experts who are charged with helping guide doctors, health insurers, and policymakers. In 2009 and again in 2016, the group put forward the current advisory, which raised the age to start routine mammography from 40 to 50 and urged women from 50 to 74 to get mammograms every two years. Women from 40 to 49 who “place a higher value on the potential benefit than the potential harms” might also seek screening, the task force said.

Now the task force has issued a draft of an update to its guidelines, recommending the screening for all women beginning at age 40.

“This new recommendation will help save lives and prevent more women from dying due to breast cancer,” said Carol Mangione, a professor of medicine and public health at UCLA, who chaired the panel.

But the evidence isn’t clear-cut. Karla Kerlikowske, a professor at UCSF who has been researching mammography since the 1990s, said she didn’t see a difference in the data that would warrant the change. The only way she could explain the new guidelines, she said, was a change in the panel.

“It’s different task force members,” she said. “They interpreted the benefits and harms differently.”

Mangione, however, cited two data points as crucial drivers of the new recommendations: rising breast cancer incidence in younger women and models showing the number of lives screening might save, especially among Black women.

There is no direct evidence that screening women in their 40s will save lives, she said. The number of women who died of breast cancer declined steadily from 1992 to 2020, due in part to earlier detection and better treatment.

But the predictive models the task force built, based on various assumptions rather than actual data, found that expanding mammography to women in their 40s might avert an additional 1.3 deaths per 1,000 in that cohort, Mangione said. Most critically, she said, a new model including only Black women showed 1.8 per 1,000 could be saved.

A 2% annual increase in the number of 40- to 49-year-olds diagnosed with breast cancer in the U.S. from 2016 through 2019 alerted the task force to a concerning trend, she said.

Mangione called that a “really sizable jump.” But Kerlikowske called it “pretty small,” and Tice called it “very modest” — conflicting perceptions that underscore just how much art is involved in the science of preventive health guidelines.

Task force members are appointed by HHS’ Agency for Healthcare Research and Quality and serve four-year terms. The new draft guidelines are open for public comment until June 5. After incorporating feedback, the task force plans to publish its final recommendation in JAMA, the Journal of the American Medical Association.

Nearly 300,000 women will be diagnosed with breast cancer in the U.S. this year, and it will kill more than 43,000, according to National Cancer Institute projections. Expanding screening to include younger women is seen by many as an obvious way to detect cancer earlier and save lives.

But critics of the new guidelines argue there are real trade-offs.

“Why not start at birth?” Steven Woloshin, a professor at the Dartmouth Institute for Health Policy and Clinical Practice, asked rhetorically. “Why not every day?”

“If there were no downsides, that might be reasonable,” he said. “The problem is false positives, which are very scary. The other problem is overdiagnosis.” Some breast tumors are harmless, and the treatment can be worse than the disease, he said.

Tice agreed that overtreatment is an underappreciated problem.

“These cancers would never cause symptoms,” he said, referring to certain kinds of tumors. “Some just regress, shrink, and go away, are just so slow-growing that a woman dies of something else before it causes problems.”

Screening tends to find slow-growing cancers that are less likely to cause symptoms, he said. Conversely, women sometimes discover fast-growing lethal cancers soon after they’ve had clean mammograms.

“Our strong feeling is that one size does not fit all, and that it needs to be personalized,” Tice said.

WISDOM, which stands for “Women Informed to Screen Depending On Measures of risk,” assesses participants’ risk at 40 by reviewing family history and sequencing nine genes. The idea is to start regular mammography immediately for high-risk women while waiting for those at lower risk.

Black women are more likely to get screening mammograms than white women. Yet they are 40% more likely to die of breast cancer and are more likely to be diagnosed with deadly cancers at younger ages.

The task force expects Black women to benefit most from earlier screening, Mangione said.

It’s unclear why Black women are more likely to get the most lethal breast cancers, but research points to disparities in cancer management.

“Black women don’t get follow-up from mammograms as rapidly or appropriate treatment as quickly,” Tice said. “That’s what really drives the discrepancies in mortality.”

Debate also continues on screening for women 75 to 79 years old. The task force chose not to call for routine screening in the older age group because one observational study showed no benefit, Mangione said. But the panel issued an urgent call for research about whether women 75 and older should receive routine mammography.

Modeling suggests screening older women could avert 2.5 deaths per 1,000 women in that age group, more than those saved by expanding screening to younger women, Kerlikowske noted.

“We always say women over 75 should decide together with their clinicians whether to have mammograms based on their preferences, their values, their health history, and their family history,” Mangione said.

Tice, Kerlikowske, and Woloshin argue the same holds true for women in their 40s.

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

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

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Delores Lowery remembers vividly the day in 2016 when she was working in a weaving plant near her home in Bennettsville, South Carolina, and the world around her seemed to go dim.

She turned to her co-workers. “And I asked, I said, ‘Why y’all got it so dark in here? They said, ‘Delores, it’s not dark in here.’ I said, ‘Yes, it is. It’s so dark in here.'”

She landed in the hospital. Her A1C level, which shows the average percentage of sugar in someone’s blood over the past few months, was 14%.

A reading of 6.5% or higher indicates diabetes.

Lowery’s home in Marlboro County is at the heart of what the Centers for Disease Control and Prevention calls the “Diabetes Belt” — 644 mostly Southern counties where rates of the disease are high.

And of those counties, NPR found that more than half have high levels of medical debt. That means at least 1 in 5 people have medical debt in collections.

That’s much higher than the national rate, which is 13%, according to the Urban Institute, a social-policy nonprofit. In Marlboro County, 37% of people have medical debt in collections.

NPR measured the overlap of Diabetes Belt counties and high medical debt counties by merging the institute’s medical debt database with the CDC’s list of Diabetes Belt counties.

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Urban Institute economist Breno Braga said medical debt, like diabetes, is concentrated in the South.

“The single most important predictor of a county’s medical debt is the prevalence of chronic conditions. So it’s basically the share of the population that has disease, such as diabetes, hypertension, and other types,” he said.

That finding is from an analysis conducted by the Urban Institute for KFF Health News and NPR as part of an investigation into medical debt published last year. The investigation found, among other things, that 100 million people in the U.S. have some kind of health care debt, a burden that can be devastating for people with chronic illnesses such as diabetes and cancer.

Lowery has been dealing with both the medical and financial challenges of Type 2 diabetes, and much more. The years since her diagnosis have been extremely difficult, with one life-changing event having overwhelming health and financial consequences.

In 2017, she came home one day to find her daughter, Ella Shantrica, on the floor, stabbed to death. The body of her granddaughter, 8-year-old Iyana, was found 12 days later in a nearby creek. In February, a man was found guilty of the killings and sentenced to life in prison.

In an interview in the front room of that tidy single-family home in Bennettsville, Lowery said it took time before she could bring herself to return to the house.

“Every day, 24 hours a day, that incident is in my head,” she said. “It will never, ever go away.”

She credits her church’s pastor with helping her go back to the house, which she shares with grandson Tyreon, a teenager on the autism spectrum. With her daughter gone, Lowery said, she is Tyreon’s sole caregiver.

Paying for diabetes care along with bills for food and housing has been a constant financial strain that eventually put her in debt.

“The cost of living was so extremely high in trying to raise my grandson that I just got behind,” she said.

Many Americans are facing similar hardships. In addition to NPR’s findings, research from the American Diabetes Association said people with the disease have more than twice the medical expenses annually as those without the disease.

“Because diabetes is a chronic illness, there are always six-month appointments,” said Donna Dees, who lives in Georgia and was diagnosed with Type 2 diabetes in 2008. “Every six months, go to the doctor, you’ve got lab work. So that’s how the costs keep building up and building up.”

Dees built up thousands of dollars in medical debt and got help from RIP Medical Debt, a nonprofit group that says it has wiped out more than $8 billion in medical debt.

Lowery will tell you that she gets high-quality and compassionate health care from a local provider. But the financial challenge of living with diabetes has put her health into decline.

A drug that once helped her, Ozempic, is now too costly for her. She said the medicine had been helping bring her diabetes under control. She was getting it delivered to her home, but she didn’t meet her copays, and the bills piled up as unpaid debt. Soon, the deliveries stopped and Lowery tried to renew the prescription at the local pharmacy.

“I went to get it and the woman told me, ‘I don’t think you’re going to be able to afford this.’ I said, ‘Why not?’ She said, ‘Because it’s seven hundred and some dollars.'”

Worse, as the drug’s profile skyrocketed in recent months as a treatment for weight loss among celebrities, demand increased and a shortage developed.

Lowery said this year that she hadn’t been able to get Ozempic for several months and that her diabetes was getting worse. Her insurance company has been of no help.

“Nobody is willing to work with me with Ozempic. I don’t know what to do,” Lowery said. “They won’t send me the medicine.”

She and her provider even talked about getting physician samples, but given Ozempic’s growing popularity, that didn’t work.

A Changing Economy

In Lowery’s hometown, others are struggling too.

More than 1 in 3 residents of the surrounding county have medical debt in collections, and 1 in 3 live in poverty.

It wasn’t always this way, locals told NPR. The area once hummed with manufacturing companies, restaurants, and other amenities. There were plenty of good jobs to go around.

But one by one, employers moved out. Today, downtown Bennettsville is pretty quiet. South Carolina as a whole has nearly 100,000 fewer manufacturing jobs than it did in 2000.

“Bennettsville used to be a more thriving community years ago,” said Lowery’s health care provider, nurse practitioner Pat Weaver. “With a lot of our plants leaving for, you know, overseas in the last 15-20 years really made a devastating impact. We used to have a hospital here and now we no longer have that. It is very poor.”

Weaver works for CareSouth, a nonprofit health center that has a federal government designation as a safety-net provider.

As she walks the halls of the clinic, checking on colleagues and patients, she says that of the 3,300 appointments she takes every year, more than 90% of the people she treats have Type 2 diabetes.

She and others point to Bennettsville’s changing economic fortune as a source of health problems in the community. Half the households in the city have an income of less than $32,000. Lower-income residents often can’t or don’t choose the kinds of healthy meals that would help them control their diabetes, she said.

“The fast foods don’t help at all, and a lot of people just eat it every day, and that’s a problem. It truly is,” Weaver said. “But we have programs to help them. We even have a program where we take patients to the grocery store and we teach them what to buy.”

CareSouth takes other steps, too, to fight the effects of poverty and disease in Bennettsville. The center has a sliding-fee scale based on ability to pay and an in-house pharmacy that uses a federal program to keep drug prices down.

For Lowery, having a medical provider like Weaver has been a lifeline. “She’s seen me through so much,” Lowery said. “She tried different medicines to get my diabetes intact.”

Finding Weaver came at a time when her family’s murders threw her into depression, her finances spiraled out of control, and her diabetes worsened. Weaver, she said, helped get her into counseling.

“When she found out what had happened, I honestly believe in my heart that she cried just like I cried,” Lowery said. “She did so much for me.”

South Carolina’s Choice on Medicaid

While there is no easy solution for Lowery, who is over 65 and enrolled in Medicare, the Urban Institute and others say a simple policy change could prevent others from getting to such a difficult stage in their disease and finances: Expand Medicaid.

“Seventy-nine out of the 100 counties with the highest levels of medical debt are in states that have not expanded Medicaid under the ACA,” the Urban Institute’s Braga said, referring to the Affordable Care Act.

Also known as Obamacare, the ACA offered states the option to expand their health insurance programs for the poor.

South Carolina is one of 10 states that have declined to do so, and where NPR identified more than two dozen counties that fall within the Diabetes Belt and have high rates of medical debt. There’s evidence from other states that people became healthier and owed less money to medical providers after Medicaid expansion.

A Boston University researcher looked at health centers just like CareSouth — more than 900 of them serving nearly 20 million patients.

The centers in states that did expand Medicaid reported better diabetes control than those in states that didn’t expand the program, and the effect was quick — within three years of the expansion.

Those improvements happened consistently among Black and Hispanic patients, who have higher rates of diabetes.

A study in Louisiana found that people who gained Medicaid coverage after an expansion there had reduced medical debt.

Lowery said that going forward she will continue to rely on her faith and her church community to help her through the tough times.

Still, she worries about the possible worsening of her diabetes and the financial stress of daily life.

“I wish things would get better,” she said. “I think I would sleep a little better, because sometimes it’s kind of hard for me to try to keep some food on the table.”

This article is from a partnership with NPR, where it was edited by Robert Little and Kamala Kelkar and produced by Meg Anderson; the photos were edited by Virginia Lozano.

About This Project

“Diagnosis: Debt” is a reporting partnership between KFF Health News and NPR exploring the scale, impact, and causes of medical debt in America.

The series draws on original polling by KFF, court records, federal data on hospital finances, contracts obtained through public records requests, data on international health systems, and a yearlong investigation into the financial assistance and collection policies of more than 500 hospitals across the country. 

Additional research was conducted by the Urban Institute, which analyzed credit bureau and other demographic data on poverty, race, and health status for KFF Health News to explore where medical debt is concentrated in the U.S. and what factors are associated with high debt levels.

The JPMorgan Chase Institute analyzed records from a sampling of Chase credit card holders to look at how customers’ balances may be affected by major medical expenses. And the CED Project, a Denver nonprofit, worked with KFF Health News on a survey of its clients to explore links between medical debt and housing instability. 

KFF Health News journalists worked with KFF public opinion researchers to design and analyze the “KFF Health Care Debt Survey.” The survey was conducted Feb. 25 through March 20, 2022, online and via telephone, in English and Spanish, among a nationally representative sample of 2,375 U.S. adults, including 1,292 adults with current health care debt and 382 adults who had health care debt in the past five years. The margin of sampling error is plus or minus 3 percentage points for the full sample and 3 percentage points for those with current debt. For results based on subgroups, the margin of sampling error may be higher.

Reporters from KFF Health News and NPR also conducted hundreds of interviews with patients across the country; spoke with physicians, health industry leaders, consumer advocates, debt lawyers, and researchers; and reviewed scores of studies and surveys about medical debt.

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

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SACRAMENTO, Calif. — When Gov. Gavin Newsom took office four years ago, the Democrat went after Republicans on the national stage as they sought to gut the Affordable Care Act. Key to his ambitious health care agenda: reinstating the fine on Californians who don’t have health coverage, which had been eliminated at the federal level.

It was a tough sell for a new governor, and Newsom needed strong allies among state Democratic leaders, who at the time, in 2019, voiced concern about essentially levying a new tax on Californians unable to afford the rising cost of health care. Democrats, who, then as now, controlled the state legislature, ultimately backed Newsom in exchange for a promise: The state would levy the fine but use that money to provide financial assistance to offset out-of-pocket costs for Californians purchasing health insurance on the state exchange, Covered California.

But Newsom, now in his second term, has since backed off that promise. His administration is holding on to revenue raised from the so-called individual mandate — the requirement that people have health coverage or pay a fine. And his proposed budget for the upcoming fiscal year beginning July 1, which is being debated in the state legislature, funnels the money to the state’s general fund.

That is infuriating fellow Democrats who accuse him of breaking a promise and disregarding the millions of Californians who can’t afford their deductibles and copays.

California began fining the uninsured in 2020, raising an estimated $1.1 billion over the first three years — and the Newsom administration projects it will bring in more than $700 million more over the next two years, bringing the projected five-year total to $1.8 billion, according to the state Department of Finance. Democratic leaders said Newsom’s tactic of holding back the money for the general fund is a “rip-off.”

“Money from the mandate should stay in health care,” Senate President Pro Tem Toni Atkins told KFF Health News, arguing the state should be distributing money now to help people afford health coverage. “I don’t know what we’re waiting for. We’ve got to figure out a way to make health care more accessible, and there’s no question that the cost of health insurance is a barrier.”

Democratic lawmakers are expected to continue ratcheting up pressure on Newsom in hopes of reaching a deal by their June 15 deadline to pass a budget bill. “We’ve always felt that the money is meant to bring insurance costs down,” said Democratic Assembly member Phil Ting, chair of the Budget Committee.

Newsom in 2019 stumped for the individual mandate amid concerns over rising insurance premiums, vowing to reduce Covered California consumer health care costs while setting himself apart from then-President Donald Trump, who was attacking the insurance mandate as unfair. Congressional Republicans had gutted the federal penalty — part of the Affordable Care Act — in 2017. Newsom argued it would still work in California to lower health care costs, and to help him achieve his goal of universal health care — the centerpiece of his ambitious health care agenda.

Newsom now argues that federal health insurance subsidies that offset the cost of monthly premiums are sufficient. And, in the face of a projected $32 billion state budget deficit, Newsom says California cannot afford to spend the money and further reduce out-of-pocket costs. He argues spending the money to slash deductibles, for instance, “would be “unsustainable.” His proposed budget would instead keep the money for the state’s general fund, to be used for anything California wants to spend it on.

But health care advocates who lobbied in favor of the fine, as well as many Democratic lawmakers, say the funds could be lifesaving and should be distributed now.

“The individual mandate was not intended to create funds for other government programs outside of health care,” said Democratic Assembly member Jim Wood, of Santa Rosa, chair of the Assembly Health Committee, at a heated budget hearing this spring. “The clear intent of the legislature was that this money was meant to go to affordability.”

Wood said he might have rejected Newsom’s plan if he had known the revenue it generated would be deposited directly into the general fund. “I don’t think I would have supported it,” he said. “It just feels like a violation of what we thought we were doing.”

Soaring out-of-pocket health care costs, for insurance premiums and deductibles for instance, are leading people to forgo health care. In California, a staggering 52% of residents report having skipped or delayed treatment in the past year for financial reasons, according to a recent survey by the nonprofit California Health Care Foundation. (KFF Health News publishes California Healthline, which is an editorially independent service of the California Health Care Foundation.)

Diana Douglas, a lobbyist with Health Access California, which was part of the coalition that backed the state’s coverage mandate in 2019, said Newsom must recognize soaring costs and spend the money now on affordability assistance. “This penalty money should be used to help Californians afford coverage and care.”

Health insurance plans offered by Covered California are continuing to get more expensive. Deductibles for a midtier insurance plan, for example, will jump to $5,400 next year, according to Covered California, up from $4,750 this year and just $3,700 two years ago.

And even many Californians who are purchasing coverage are putting off treatment in the face of high costs. A survey by Covered California in 2022 found that 48% of its consumers delayed important medical care due to cost.

Newsom this spring dodged a question by KFF Health News about the criticism he is facing over his push to retain the mandate money, saying simply he’s “proud” to have established the state coverage mandate and noting that federal premium subsidies are available for Californians purchasing coverage via Covered California. His administration defended the push to funnel money into the general fund, saying revenues would be repaid to a special health fund and be available to use on health care eventually, if the federal government cuts back existing premium subsidies. Administration officials argue that Newsom is essentially borrowing the money and say it’ll be repaid later — though lawmakers have expressed concern that he’ll never make good on that promise.

Critics and some Democratic lawmakers say holding back the money is a double whammy for low- and middle-income residents who are struggling to pay for coverage, and argue that it amounts to a tax on the poor. “It feels like we’re trying to save it on the backs of our low-income communities,” said Democratic state Sen. Caroline Menjivar, who represents the state’s San Fernando Valley.

Democratic lawmakers this year are backing an alternative proposal, championed by Health Access California, to spend revenue from fining uninsured residents on increasing health insurance subsidies for low- and middle-income people. They would be making good on a deal advocates secured with state Democratic lawmakers last year to reduce or eliminate out-of-pocket costs in Covered California and scrap deductibles entirely for a mid-tier plan.

“We need to make sure people not only have health coverage, but that they can also afford to actually use it,” said Ronald Coleman Baeza, a health care lobbyist with the California Pan-Ethnic Health Network.

Although Newsom and his Democratic allies have passed major expansions in coverage, the state does not have universal health care. Experts say more than 2.5 million Californians remain uninsured, including unauthorized immigrants who earn too much to qualify for Medi-Cal, and lawmakers are growing increasingly agitated that not all residents who are insured can afford to use their coverage.

“There was a clear commitment that these dollars were going to be used to bring down heath care costs, and we haven’t done it,” said Assembly member Pilar Schiavo, a Democrat representing the Santa Clarita Valley, who introduced a bill that would require any revenue raised from the individual mandate be permanently set aside for health care. Though it died this year, it can be revived next year, and advocates say they will continue pressing Newsom to distribute the existing money to Covered California consumers.

“We need to keep our promises,” Schiavo said. “If you have insurance that you can’t afford to use, or you’re afraid to go see the doctor because of how high that bill might be, then you don’t truly have access or universal coverage.”

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

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

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Millions of Americans in the past few years have run into this experience: filing a health care insurance claim that once might have been paid immediately but instead is just as quickly denied. If the experience and the insurer’s explanation often seem arbitrary and absurd, that might be because companies appear increasingly likely to employ computer algorithms or people with little relevant experience to issue rapid-fire denials of claims — sometimes bundles at a time — without reviewing the patient’s medical chart. A job title at one company was “denial nurse.”

It’s a handy way for insurers to keep revenue high — and just the sort of thing that provisions of the Affordable Care Act were meant to prevent. Because the law prohibited insurers from deploying previously profit-protecting measures such as refusing to cover patients with preexisting conditions, the authors worried that insurers would compensate by increasing the number of denials.

And so, the law tasked the Department of Health and Human Services with monitoring denials both by health plans on the Obamacare marketplace and those offered through employers and insurers. It hasn’t fulfilled that assignment. Thus, denials have become another predictable, miserable part of the patient experience, with countless Americans unjustly being forced to pay out-of-pocket or, faced with that prospect, forgoing needed medical help.

A recent KFF study of ACA plans found that even when patients received care from in-network physicians — doctors and hospitals approved by these same insurers — the companies in 2021 nonetheless denied, on average, 17% of claims. One insurer denied 49% of claims in 2021; another’s turndowns hit an astonishing 80% in 2020. Despite the potentially dire impact that denials have on patients’ health or finances, data shows that people appeal only once in every 500 cases.

Sometimes, the insurers’ denials defy not just medical standards of care but also plain old human logic. Here is a sampling collected for the KFF Health News-NPR “Bill of the Month” joint project.

• Dean Peterson of Los Angeles said he was “shocked” when payment was denied for a heart procedure to treat an arrhythmia, which had caused him to faint with a heart rate of 300 beats per minute. After all, he had the insurer’s preapproval for the expensive ($143,206) intervention. More confusing still, the denial letter said the claim had been rejected because he had “asked for coverage for injections into nerves in your spine” (he hadn’t) that were “not medically needed.” Months later, after dozens of calls and a patient advocate’s assistance, the situation is still not resolved.
• An insurer’s letter was sent directly to a newborn child denying coverage for his fourth day in a neonatal intensive care unit. “You are drinking from a bottle,” the denial notification said, and “you are breathing on your own.” If only the baby could read.
• Deirdre O’Reilly’s college-age son, suffering a life-threatening anaphylactic allergic reaction, was saved by epinephrine shots and steroids administered intravenously in a hospital emergency room. His mother, utterly relieved by that news, was less pleased to be informed by the family’s insurer that the treatment was “not medically necessary.”

As it happens, O’Reilly is an intensive-care physician at the University of Vermont. “The worst part was not the money we owed,” she said of the $4,792 bill. “The worst part was that the denial letters made no sense — mostly pages of gobbledygook.” She has filed two appeals, so far without success.

Some denials are, of course, well considered, and some insurers deny only 2% of claims, the KFF study found. But the increase in denials, and the often strange rationales offered, might be explained, in part, by a ProPublica investigation of Cigna — an insurance giant, with 170 million customers worldwide.

ProPublica’s investigation, published in March, found that an automated system, called PXDX, allowed Cigna medical reviewers to sign off on 50 charts in 10 seconds, presumably without examining the patients’ records.

Decades ago, insurers’ reviews were reserved for a tiny fraction of expensive treatments to make sure providers were not ordering with an eye on profit instead of patient needs.

These reviews — and the denials — have now trickled down to the most mundane medical interventions and needs, including things such as asthma inhalers or the heart medicine that a patient has been on for months or years. What’s approved or denied can be based on an insurer’s shifting contracts with drug and device manufacturers rather than optimal patient treatment.

Automation makes reviews cheap and easy. A 2020 study estimated that the automated processing of claims saves U.S. insurers more than $11 billion annually.

But challenging a denial can take hours of patients’ and doctors’ time. Many people don’t have the knowledge or stamina to take on the task, unless the bill is especially large or the treatment obviously lifesaving. And the process for larger claims is often fabulously complicated.

The Affordable Care Act clearly stated that HHS “shall” collect the data on denials from private health insurers and group health plans and is supposed to make that information publicly available. (Who would choose a plan that denied half of patients’ claims?) The data is also supposed to be available to state insurance commissioners, who share with HHS the duties of oversight and trying to curb abuse.

To date, such information-gathering has been haphazard and limited to a small subset of plans, and the data isn’t audited to ensure it is complete, according to Karen Pollitz, a senior fellow at KFF and one of the authors of the KFF study. Federal oversight and enforcement based on the data are, therefore, more or less nonexistent.

HHS did not respond to requests for comment for this article.

The government has the power and duty to end the fire hose of reckless denials harming patients financially and medically. Thirteen years after the passage of the ACA, perhaps it is time for the mandated investigation and enforcement to begin.

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

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State abortion bans in Tennessee and beyond, which constrain women’s health care, have put family planning clinics at risk of losing their federal funding.

The conflict involves the Title X family planning program, which provides services to low-income people, including minors. As of 2021, more than 3,200 clinics used federal grants to supply free or low-cost contraception, testing for sexually transmitted infections, screening for breast and cervical cancer, and pregnancy-related counseling.

Federal regulations for the program, which was established more than 50 years ago to reduce unintended pregnancies, say participating clinics must offer pregnant women information about terminating pregnancies and abortion referrals on request. But following those rules puts medical providers at odds with state laws banning abortion, some of which threaten jail time, fines, or the loss of medical licenses if they help someone end a pregnancy.

President Joe Biden’s administration at the end of March cut off Tennessee’s Title X funds after determining the state health department — which oversees its clinics and was awarded $7.1 million last year — violated federal rules by not counseling patients about abortion. “Continued funding is not in the best interest of the government,” two U.S. Department of Health and Human Services officials wrote to Tennessee officials on March 20. The state had more than 100 Title X clinics as of March, according to an HHS directory.

In 2022, the federal government awarded Title X grants to roughly 90 entities, a mix of state and local governments and private organizations. Those grantees distribute funds to public or private clinics.

Federal law prohibits clinics from using Title X money to pay for abortions. However, HHS requires clinics to offer pregnant women information about prenatal care and delivery, infant care, foster care, adoption, and pregnancy termination.

In states where abortion is generally illegal, that could mean directing patients to providers in other states. But Tennessee told family planning clinics they could discuss only services that were legal in the state — effectively cutting off any talk about abortion.

Tennessee allows abortions only under limited circumstances, including to save a pregnant person’s life. State health department policies for family planning “are consistent with state law,” said Jade Byers, a spokesperson for Republican Gov. Bill Lee. Tennessee allocated state funds to replace the federal money.

Whitney Rice, director of Emory University’s Center for Reproductive Health Research in the Southeast, said failing to provide timely information and referrals for abortion “could contribute to further delays in people’s ability to access that care,” especially because women may need to travel long distances for it.

The clash over the federally funded clinics is part of the widening fallout from the Supreme Court’s June 2022 decision in Dobbs v. Jackson Women’s Health Organization ending the constitutional right to an abortion.

In Idaho, which has a near-total abortion ban, two Planned Parenthood clinics with Title X funding recently stopped giving patients abortion information and halted out-of-state referrals, according to a lawsuit Planned Parenthood and the American Civil Liberties Union filed in April against Idaho’s attorney general.

State law prohibits providers from assisting in performing or attempting to perform an abortion, and violators risk having their medical license suspended.

The clinics’ decision came after Idaho Attorney General Raúl Labrador, in a March 27 letter, said Idaho law prohibits providers from “referring a woman across state lines to access abortion services.”

That interpretation is “preventing medical professionals from providing full information to their patients,” said Mack Smith, spokesperson for Planned Parenthood Great Northwest, Hawaii, Alaska, Indiana, Kentucky.

Though Labrador later withdrew the letter, Planned Parenthood clinics there still are not referring patients out of state for abortions, Smith said.

Before Labrador’s letter, the lawsuit states, Planned Parenthood staff would furnish general information about pregnancy options, a list of abortion providers in other states and organizations that help defray patients’ abortion and related costs, and a flyer about Idaho’s abortion law. Staff would also occasionally help patients schedule care outside of Idaho. Now, “Planned Parenthood providers no longer do so.”

“When my patients require abortions, I am now forced to tell them that I am unable to help them and that I cannot say anything about their abortion options in other states,” Caitlin Gustafson, a physician who had practiced at an Idaho Planned Parenthood clinic, said in a legal declaration.

Kimberley Harris, a visiting assistant professor at Texas Tech University School of Law, said clinicians in states with strict bans worry about referring patients to other states because a prosecutor could interpret that as “aiding and abetting an abortion.”

Facilitating medication abortion in particular could “pose potential risk to health care providers,” Harris said, because a patient they refer to obtain pills out of state might then take them in a state where abortion is illegal. Medication abortion accounts for most abortions in the U.S. and involves taking a series of pills during the first 10 weeks of pregnancy.

“The federal regulation might require me to provide counseling and provide information,” Harris said of clinicians. “But if you’re telling providers that they may lose their license, or they might go to jail, or they might face a huge fine? Rightfully, they’re going to be concerned.”

As senior HHS officials travel the country, they are getting an earful about the issue.

HHS spokesperson Tara Broido said that, increasingly, “providers and patients have raised concerns about the impact that the Dobbs decision has had on access” to pregnancy counseling and referrals.

KFF Health News asked Broido which grantees have not been following the counseling and referral requirements. She declined to say.

People who use Title X’s services are disproportionately women. A report from HHS’ Office of Population Affairs said roughly two-thirds of 1.7 million patients in 2021 had family incomes at or below the poverty line. Thirty-six percent were uninsured, more than two times the national uninsured rate for adults.

The Office of Population Affairs and the Centers for Disease Control and Prevention jointly recommend family planning services that clinics are expected to follow. They include pregnancy testing and counseling.

The Title X program has been whipsawed before.

In 2019, the Trump administration barred Title X clinics from making abortion referrals. And the administration said abortion providers couldn’t share physical space with Title X clinics. The number of participating clinics subsequently dropped sharply — from 3,825 sites in 2019 to 3,031 the following year. With fewer clinics, the number of people receiving free or low-cost family planning services through the program plummeted from 3.1 million in 2019 to 1.5 million in 2020.

The Biden administration in 2021 overturned many of the Trump policies. The Biden rules remain in effect, but several states sued to block them. That litigation is ongoing.

Sarah Parshall Perry, a senior legal fellow at the conservative Heritage Foundation think tank, anticipates additional challenges to Title X rules because “states have an interest in defending their own laws and their ability to enforce their own laws.”

In Texas, which prohibits abortion with few exceptions, the nonprofit Every Body Texas oversees 154 Title X family planning clinics.

Its providers are still counseling pregnant women about options, but “that’s not to say it hasn’t been made very, very difficult,” said Stephanie LeBleu, the group’s acting Title X director.

LeBleu said the approach to counseling “can look different” from clinic to clinic. For example, clinics in rural Texas “have to be a lot more cautious about how they share information with their clients,” LeBleu said. Sometimes that means making a “referral to the referral” — such as directing patients to organizations like All-Options, which operates a national pregnancy options hotline.

ask for information on pregnancy options, “our clinics refer clients to other resources,” Karen M. Landers, chief medical officer for the Alabama Department of Public Health, said in a statement. The department declined to say what those resources are and whether clinicians worry about being prosecuted under Alabama law for providing abortion counseling or referrals.

“Clients are additionally informed of the legality of pregnancy termination in the state,” Landers wrote.

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

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

How should journalists cover political candidates who make false claims about the safety and effectiveness of vaccines? That question will need to be answered now that noted anti-vaccine activist Robert F. Kennedy Jr. has officially entered the 2024 presidential race.

Meanwhile, South Carolina has become one of the last states in the South to pass an abortion ban, making the procedure all but impossible to obtain for women across a broad swath of the country.

This week’s panelists are Julie Rovner of KFF Health News, Alice Miranda Ollstein of Politico, Rachel Cohrs of Stat, and Sarah Karlin-Smith of the Pink Sheet.

Panelists Rachel Cohrs Stat News @rachelcohrs Read Rachel's stories Sarah Karlin-Smith Pink Sheet @SarahKarlin Read Sarah's stories Alice Miranda Ollstein Politico @AliceOllstein Read Alice's stories

Among the takeaways from this week’s episode:

• Republican lawmakers and President Joe Biden continue to bargain over a deal to avert a debt ceiling collapse. Unspent pandemic funding is on the negotiating table, as the White House pushes to protect money for vaccine development — though the administration has drawn criticism for a lack of transparency over what would be included in a clawback of unspent dollars.
• In abortion news, South Carolina is the latest state to vote to restrict access to abortion, passing legislation this week that would ban abortion after six weeks of pregnancy — shortly after pregnant people miss their first period. And Texas is seeing more legal challenges to the state law’s exceptions to protect a mother’s life, as cases increasingly show that many doctors are erring on the side of not providing care to avoid criminal and professional liability.
• Congress is scrutinizing the role of group purchasing organizations in drug pricing as more is revealed about how pharmacy benefit managers negotiate discounts. So-called GPOs offer health care organizations, like hospitals, the ability to work together to leverage market power and negotiate better deals from suppliers.
• Lawmakers are also exploring changes to the way Medicare pays for the same care performed in a doctor’s office versus a hospital setting. Currently, providers can charge more in a hospital setting, but some members of Congress want to end that discrepancy — and potentially save the government billions.
• And our panel of health journalists discusses an important question after a prominent anti-vaccine activist entered the presidential race last month: How do you responsibly cover a candidate who promotes conspiracy theories? The answer may be found in a “truth sandwich.”

Also this week, Rovner interviews KFF Health News senior correspondent Aneri Pattani about her project to track the money from the national opioid settlement.

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

Julie Rovner: KFF Health News’ “Remote Work: An Underestimated Benefit for Family Caregivers,” by Joanne Kenen

Alice Miranda Ollstein: Reuters’ “How Doctors Buy Their Way out of Trouble,” by Michael Berens

Rachel Cohrs: ProPublica’s “In the ‘Wild West’ of Outpatient Vascular Care, Doctors Can Reap Huge Payments as Patients Risk Life and Limb,” by Annie Waldman

Sarah Karlin-Smith: The New York Times’ “Heat Wave and Blackout Would Send Half of Phoenix to E.R., Study Says,” by Michael Levenson

Also mentioned in this week’s episode:

• KFF Health News’ “Abortion Bans Are Driving Off Doctors and Closing Clinics, Putting Basic Health Care at Risk,” by Julie Rovner.
• Stat’s “House Panel Takes First Steps Toward Reining In Hospitals With ‘Site-Neutral’ Changes,” by Rachel Cohrs.
• Vice’s “ABC News and CNN Manage to Demonstrate Exactly What Not to Do With Robert F. Kennedy Jr.,” by Anna Merlan.

Credits Francis Ying Audio producer Emmarie Huetteman Editor

To hear all our podcasts, click here.

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

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

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HHS Awards Funding to Build Out the Biden-Harris Administration’s Crisis Care 988 Lifeline

Catherine Reitzel’s multiple sclerosis medication costs nearly $100,000 a year. Kris Garcia relies on a drug for a blood-clotting disorder that runs $10,000 for a three-day supply. And Mariana Marquez-Farmer would likely die within days without her monthly $300 vial of insulin.

At best, a Colorado panel of medical and pharmacy experts seeking to cut the costs of expensive drugs will be able to help only one of them.

Starting this summer, the state’s Prescription Drug Affordability Board will choose up to 18 high-cost drugs for review over the next three years to determine if the medications are unaffordable and whether to cap what health plans and consumers pay for them.

But with hundreds of expensive drugs to choose from, the board members face tough decisions about who will get help now and who will have to wait.

Do they tackle drugs with extremely high costs taken by only a handful of patients, or drugs with merely very high costs taken by a larger group? Should they consider only out-of-pocket costs paid by consumers, such as for insulin, whose copays Colorado caps at $50 a month, or the total cost of the drug to the health system? Will they weigh only drug prices, or will they try to right social wrongs with their choices?

And what does “affordable” even mean?

“That question alone is a lot harder to answer than it might seem at face value,” said Jennifer Reck, project director for the National Academy for State Health Policy’s Center for State Prescription Drug Pricing. “You immediately get into how utterly complex our drug supply chain is, how opaque it is, how many different prices there are,” she said.

Maryland was the first state to establish a drug affordability board in 2019, but funding challenges and the pandemic have slowed its progress. Colorado passed a bill creating its board in 2021 and has already moved ahead of Maryland in the process. Washington followed in 2022 but is still in its early phases of implementation.

Maine, New Hampshire, Ohio, and Oregon have also established boards, but they lack the power to limit drug payments. And at the federal level, the Inflation Reduction Act of 2022 included a provision requiring the Health and Human Services secretary to negotiate prices with drug companies for a small number of the most costly medications covered by Medicare.

It’s taken years for the Colorado and Maryland board members to create all the rules and regulations to govern their work before getting to the point of looking at specific drugs.

“It’s just a long, tortuous government process to get things up and running,” said Gerard Anderson, a professor of health policy and management at Johns Hopkins University, and a member of Maryland’s board. “You basically have to dot every ‘i’ and cross every ‘t’ in order not to get sued.”

Setting Priorities

On May 12, Colorado released its first list of hundreds of drugs eligible for review, mostly because they each cost more than $30,000 for a course of treatment. Next month, they’ll release a dashboard ranking those drugs according to the board’s priorities. The dashboard can also be used to examine which drugs have the highest price tags, which have had the largest increases in price, and which the state spends the most on. That would allow the board to begin affordability reviews this summer and set payment limits for the first four to eight drugs sometime in 2024. But board members will first have to set their priorities, and those could change from year to year.

“Maybe one year we focus on the impact to the system, and another year we focus on out-of-pocket costs, and one year we focus on a lifesaving drug that has smaller utilization,” said Lila Cummings, director of the Colorado board.

Such approaches could pit one group of patients against others looking for cost relief. But Cummings said not all groups are eager to see payment limits.

“Some of them said, ‘We want the board to focus on our drugs,’ and others said, ‘Please leave us alone,’” she said.

That reluctance likely reflects the close ties that some patient groups have with the manufacturers of their medications, including receiving funding from the drugmakers.

“We have seen cases in public hearings — it seems counterintuitive or surprising — where a patient group, instead of being thrilled that they might have access to the drugs at a lower price, instead are arguing against upper payment limits,” Reck said. “But in most cases, there’s a pretty clear financial connection to drug manufacturers.”

Maryland has also received input from patient groups as it finalizes its regulations.

“So far it has not been, ‘Pick me! Pick me! Pick me!’” Anderson said. But that could change once the Maryland board begins its affordability reviews this fall.

The drug that Garcia, 47, of Denver, takes did not make the board’s list. Diagnosed with four bleeding disorders, including von Willebrand disease, he needs the medication Humate-P, made by CSL Behring, to replace one of the clotting factors missing in his blood. This winter, driving home from his job at the airport, Garcia hit a patch of black ice, spun out, and careened into a concrete barrier at 75 mph. He needed the expensive medication every day for the first five days after the accident, and then every other day for a full month.

“It’s not like I can just sit there and say no to this medication, because my bleeds get so bad,” he said.

According to Perry Jowsey, executive director of the National Hemophilia Foundation’s Colorado chapter, about 300 to 400 individuals are being treated for von Willebrand disease in Colorado. That’s far fewer than the roughly 10,000 Coloradans with MS or the 74,000 who manage their diabetes with insulin.

“In my shoes, I would target what would help the most people,” Garcia said. “You have to find a balance, especially starting out. You’re not going to be able to help everyone.”

The Colorado and Maryland boards will rely on data from state databases that show how much various public and private health plans pay for drugs. That data, however, doesn’t capture what uninsured patients pay, and it doesn’t give any insight into how much manufacturers pay for research and development.

“The goal is not to stifle innovation,” Anderson said. “But we can’t get any public data, so we have to ask the pharmaceutical industry, and they’re not required to give us the data.”

The boards want to ensure that patients like Reitzel still have access to new and better therapies. Reitzel, 38, of Highlands Ranch, was diagnosed with multiple sclerosis in 2008 and has switched medications several times seeking one whose side effects she could tolerate. “They’re all terrible in their own special way,” she said.

In 2021, she began taking a relatively new drug from Biogen and Alkermes called Vumerity, which was included on Colorado’s list of eligible drugs. But the cost of a three-month supply was nearly $24,000, including a copay of more than $7,000. Biogen provides up to $20,000 in annual copay assistance through a debit card she can use at the pharmacy. But now her health plan no longer credits those payments toward her deductible. It makes it almost impossible for her to meet the $25,000 out-of-pocket maximum under her plan.

“Primarily for this reason, I am no longer taking any medication,” Reitzel said, “and have to only hope my disease does not progress.”

Colorado legislators passed a bill to require health plans to count copay assistance programs toward patients’ deductibles for drugs with no generic equivalents, but that provision does not take effect until 2025.

Insulin as an Outlier?

Just a couple of years ago, insulin may have been a higher priority for drug affordability boards, but now it’s not so clear. Both Colorado and Maryland have established insulin copay caps that provide pocketbook relief, at least for patients with coverage. And manufacturers are making their own moves to lower insulin prices. That could prompt the boards to bypass insulin and concentrate their limited resources on other high-cost drugs.

Copay caps do not lower the actual cost of insulin but instead spread it among members of the health plan through higher premiums. The Colorado copay caps don’t help new state residents and initially did not help those without insurance, either. Both of those hurdles would have applied to Marquez-Farmer when she moved from California to Colorado Springs a couple of years ago.

“I got married to my husband during covid because I didn’t have insurance,” she said. “I loved him, and it all worked out, but a big reason for me to marry him was because I would not be able to afford insulin.”

Marquez-Farmer, 34, said that while insulin may not be the most expensive drug on the market, many Coloradans, particularly those from marginalized communities who have higher rates of diabetes, struggle to afford it.

“I’m not saying the other medicines are not important, because obviously they are,” she said. “The reality is there’s more people who are being affected by not being able to afford their insulin and a lot of people who are dying because of them rationing insulin.”

Andrew York, executive director of the Maryland board, said the payment limits should be viewed as a last resort, a tool that can be used when other cost-control measures haven’t worked.

“The goal is for folks to never be able to say that they can’t afford their insulin. And I think we may get there soon enough just because of how much is happening in that space,” he said. “So if that’s the case, then maybe boards don’t need to use the upper payment limit tool.”

At least one form of insulin was included on Colorado’s list of drugs eligible for review, but not the most commonly taken brand-name insulins. That precludes the Colorado board from addressing insulin costs more broadly.

The pharmaceutical industry has pushed back against the concept of payment limits, warning that drugmakers could pull out of states that set payment limits.

“The boards are acutely aware of this discussion point. The interest and the purpose of these boards is to increase access to the drugs, not decrease it,” York said. “But there’s kind of this game theory element of: How will manufacturers react?”

Reck discounted the notion that a payment limit would prompt a manufacturer to abandon a profitable market.

“Unfortunately, it’s kind of a scary message and it can be impactful on patients,” she said.

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

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For support, call Trans Lifeline at 877-565-8860 or The Trevor Project at 866-488-7386; or text to 678-678.

Josie had put off packing long enough. The high school sophomore in St. Augustine, Florida, sat on her bed while her mom, Sarah, pulled clothes from her closet.

It held a trove of good memories — like the red dress Josie wore to the winter homecoming dance and a pink cover-up she sported at a friend’s pool party. Good times like these have felt scarce lately. Josie, who’s transgender, no longer feels welcome in Florida.

Her family requested they be identified by their first names only, fearing retaliation in a state where Republican Gov. Ron DeSantis and other officials have proposed, politicized, and passed policies in health care and education that limit identity expression, access to certain school activities, and accommodations for trans people.

The ACLU is tracking bills it calls an “attack on LGBTQ rights, especially transgender youth.” State legislation has forced some residents like Josie to rethink where they want to call home.

Josie moved more than a thousand miles from St. Augustine — and her parents — to start a new life in Rhode Island and stay with her aunt and uncle, who live outside Providence.

Preparing her for the move, Josie’s mom held up outfits and asked, “Staying or going?”

The formal dress could stay behind. Cardigans and overalls went in the suitcase. At one point, the family dog, Reesie, crawled past the luggage to snuggle up to Josie.

“She has a sense when I’m sad, and just comes running in,” said Josie, 16.

Moving to Rhode Island had been Plan B for some time, but Josie said she never thought it would happen. Much has changed in the past year.

Florida is one of more than a dozen states that have passed bans on gender-affirming medical treatments for minors, such as puberty blockers, hormone therapy, and certain surgeries.

Florida’s medical boards began debating those bans last summer. For months, Josie was terrified she would lose access to hormones she takes to help her body align with her identity.

Board members argued gender-affirming treatments were “experimental” and, in March, barred doctors from prescribing them to minors. They allowed children who had already started care to continue. But Josie didn’t trust that her access would last.

This spring, the legislature considered forcing all trans youth to stop treatment by Dec. 31, part of a bill to bolster restrictions on transgender care.

“I thought that they would realize what they’ve done wrong and repeal some things,” Josie said. “But they just kept going. It just became, like, too real, too fast.”

Lawmakers ended up stripping that provision just before the session ended this month, allowing young people like Josie to stay in treatment.

But she had already made her decision to move out of state. School has been challenging at times since Josie came out as trans in eighth grade. Some childhood friends rejected her.

Josie wanted to play on the girls tennis team, but Florida law bans trans girls and women from competing on school teams meant for athletes assigned female at birth.

She said living in Florida was also especially painful after the state passed the Parental Rights in Education law, which “prohibits classroom discussion about sexual orientation or gender identity in certain grade levels.” Critics call it the “Don’t Say Gay” law and said it has had a chilling effect on some teachers. Josie noticed stickers signifying that areas were “safe spaces” for LGBTQ+ people had been taken down at school.

“Which is just ridiculous, like you want your students to be comfortable and safe,” she said.

The new laws and anti-trans rhetoric are hurting kids across Florida, said Jennifer Evans, a clinical psychologist at the University of Florida’s Youth Gender Program in Gainesville.

“I’m seeing more anxiety, more depression,” Evans said. “Things I hear patients say are, ‘The government doesn’t want me to exist.’ They don’t feel safe.”

States are pushing measures on all sorts of gender-related issues — not just health care, but what schools can teach or which bathrooms people can use.

Bills don’t have to pass to cause harm, said Evans, who is queer.

“It’s a lot to feel like enough people in this country don’t agree with your existence — which actually isn’t affecting them — that people want to shut down other people’s access to living complete and affirmed lives,” she said. “It’s painful to see that.”

Four families who sought care at Evans’ clinic have already left Florida, she said, while another 10 plan to move this year. Some older teens she treats also want to get out when they turn 18.

But moving isn’t easy for many families.

“Just financially, it’s difficult to uproot what we’ve set up,” Josie’s dad, Eric, said.

They’ve owned their home in St. Augustine for a long time. Eric recently started a new job. Josie’s mom, Sarah, works at a private college that offers a benefit that allows Josie and her older sister to get reduced tuition at some colleges around the country.

So her parents decided that, at least for now, Josie would go live with her aunt and uncle and they would stay behind.

The choice was devastating.

“It was just terror in my heart, like you could just feel that cold burst in my chest just going all throughout my body,” said Sarah. “Josie is part of everything I do.”

Josie will finish her sophomore year in Rhode Island before returning to St. Augustine for summer break. Her family sees it as a trial run for what could be years of separation.

One night before Josie left, she invited friends over for a going-away party. The teens played a dance video game, laughing as they performed a hip-hop routine.

Sarah brought out a Black Forest cake. “We love you Josie” was piped in frosting along the platter, framed by two hearts.

It was a simple but powerful send-off from the support system Josie has relied on in Florida. A few days later, she and her mom flew north to get Josie settled. Leaving her daughter in Rhode Island was “agony,” Sarah said.

“I was a mess,” she said. “I cried the whole way to the airport. I just felt I was going the wrong way.”

Sarah is still adjusting to life without Josie at home, but they talk every day. And Josie is getting used to her new environment. Her aunt and uncle have been great, she said, and she’s making friends at school.

Her new school is a little smaller than her old one and in a community that feels more liberal-minded, the family said. Josie said she loves seeing pride flags in the halls and plans to join the Gender and Sexuality Alliance Club. It all feels like a “bombardment of support.”

“It was just, like, such a shock to me — like, not a bad shock, but, like, just shocked that this is how schools can be,” Josie said. “It’s just that Florida’s choosing not to be like that.”

DeSantis’ office did not respond to several requests for comment to address concerns of families like Josie’s.

Since Josie moved to Rhode Island in April, DeSantis has signed four bills that would curb health care and gender expression of trans people.

Josie’s parents said they’ll keep their pride flag waving in the front yard and advocate for equality while she’s away.

Josie said she thinks about the trans kids who can’t leave and urged them not to give up hope. But right now, she needs to move on.

This article is from a partnership that includes WUSF, NPR, and KFF Health News.

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

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SACRAMENTO, Calif. — One of the country’s richest hospitals, which caters to Hollywood elites, accepted nearly $28 million last year from an unusual source: a charity that siphons money from other California hospitals, many of which serve the state’s poorest residents.

Cedars-Sinai Health System in Los Angeles secured the grant under California’s recession-era financing scheme that allows wealthy hospitals to take valuable health care tax money from poorer ones. Hospitals across the state agreed in 2009 to the arrangement in order to tap billions more per year in taxpayer dollars to support the state’s Medicaid program, called Medi-Cal.

Now, some of those hospitals serving a greater share of Medi-Cal patients are in dire financial need and face cutbacks and potential closures. But instead of asking for help for only those at greatest risk, California’s powerful hospital industry is putting the squeeze on Gov. Gavin Newsom and fellow Democratic lawmakers for an unprecedented bailout. And they are doing it even as the state faces a nearly $32 billion budget deficit.

Hospitals argue that to avert a crisis, they need an emergency infusion of $1.5 billion. They also want a steady annual stream of new health care tax money despite already having their own dedicated tax intended to support struggling facilities that serve a large percentage of the state’s low-income people, such as Madera Community Hospital in the Central Valley, which closed earlier this year.

Ads by the California Hospital Association paint a scary picture: “1 in 5 Hospitals are at risk of closure.” Yet another warns, “Health care that millions rely on is at risk.” Those claims are being repeated by state lawmakers as they debate financial rescue for hospitals.

But a KFF Health News analysis of state data revealed that despite increased labor costs and inflation, many California hospitals have been profitable in recent years. The industry earned roughly $131 billion last year in patient revenue, a key indicator of profitability — $7.3 billion more than the previous year. After factoring in rising costs, the industry still turned a profit of about $207 million last year. State figures show the industry reaped $9.2 billion in patient revenue in 2021, partly a reflection of big swings in the stock market.

Leading health care finance experts and former state officials are urging Newsom and lawmakers to resist the industry’s fear tactics, saying that, even though hospitals are still reeling from the covid-19 pandemic, many have plush financial reserves.

“They are big fans of these giant bailouts, where the relatively rich hospitals benefit as well as the ones who really need it,” said Glenn Melnick, a health economist at the University of Southern California. “A big chunk of the hospitals, even if they’re losing money, don’t need taxpayer money to help them through this crisis.”

Melnick and others who have analyzed the financial state of California hospitals say a sliver of California’s 368 general hospitals are in crisis and that relief should be given only to those that can show they are in immediate peril. Many hospitals in underserved and rural communities are struggling financially, in part because they have failed to attract enough patients with private insurance. And the cost of providing care to lower-income patients who rely on Medi-Cal hasn’t kept pace with government reimbursement rates.

But low Medi-Cal rates aren’t necessarily a predictor of financial disaster, according to a report released Thursday by the California Health Care Foundation. (KFF Health News publishes California Healthline, which is an editorially independent service of the California Health Care Foundation.)

Health economists found that hospitals “with the lowest margins were no more dependent on Medi-Cal or Medicare than the average California hospital.” And many cash-strapped hospitals may be sitting on enormous wealth, an indication they don’t necessarily need more taxpayer money.

“Most of the facilities that have negative margins are a part of larger systems, which suggests that they have the underlying wealth of those systems to stabilize them,” said Kristof Stremikis, director of market analysis and insight for the foundation.

Carmela Coyle, the influential leader of the state hospital lobby, said California’s hospitals are in the worst crisis they’ve faced in recent history, largely because the state reimburses providers just 74 cents on the dollar to care for Medi-Cal patients.

“You have these underserved communities in the Central Valley, where a hospital comes in, they’re doing their best, and those underserved individuals are not reimbursed the same as everybody else,” Coyle told KFF Health News. “The real underlying issue here is government underfunding.”

But Coyle isn’t disclosing the full picture. Experts agree that reimbursement rates in Medi-Cal — money provided to doctors, clinics, and hospitals for taking care of low-income patients — are too low to cover the actual cost of care. Yet the state and federal government give billions in bonus and incentive payments that can actually result in higher reimbursements and even profits.

After Madera Community Hospital cut off services and shuttered, Coyle warned that it was a “canary in the coal mine” for other hospitals unable to make ends meet because of its high proportion of low-income patients and reliance on government payments. But the hospital actually made nearly $15 million from Medi-Cal in 2021, KFF Health News has gleaned from state hospital financial records.

The overarching problem, according to emails obtained by KFF Health News, was an inability to demand higher payments from commercial health insurance companies, as well as attract their patients — 70% of whom sought care outside Madera County.

The hospital “does not have the ability to negotiate competitive rates on its own,” according to an email last June to the California attorney general’s office from representatives of Trinity Health, a national Catholic health system, which backed off from acquiring the hospital.

The Madera hospital’s CEO, Karen Paolinelli, and other hospital leaders made another last-ditch effort to keep its doors open: They asked for an advance payment of their hospital tax revenue — money distributed through health insurance plans and the state. The payment they sought was from the Hospital Quality Assurance Fee, which allows hospitals to tax themselves to draw in federal money for Medi-Cal. Adopted in California in 2009 and later approved by voters through a ballot initiative, the tax brought in $8.4 billion last year.

“We did ask before we closed to get paid some of the provider money owed to us,” Paolinelli said. “But we were not successful.”

She said the hospital needed $5 million to remain open and couldn’t secure funding in time.

Under the hospital tax revenue, the money is spread across California hospitals, but the system is designed to protect the rich hospitals and essentially help them avoid industry taxes.

Hospitals with a greater share of low-income patients pay a higher tax than wealthier systems that don’t serve as many poor people. However, they benefit handsomely, ultimately increasing how much they are paid to care for Medi-Cal patients. Then those hospitals give up a portion of their tax money to a charity that funnels it to better-performing hospitals in exchange for their political support for the hospital tax.

“The winner hospitals contribute money to a fund that is used to distribute money to the loser hospitals,” said Elaine Batchlor, CEO of MLK Community Health, which is asking for financial help because roughly 70% of its patients are on Medi-Cal. “No hospital loses by being a part of it. If you were going to lose money, you’d be against it.”

The transactions are routed through the California Health Foundation and Trust, the charity operated by the leadership of the California Hospital Association.

For example, Cedars-Sinai paid nearly $172 million in taxes in 2022, eclipsing the $151 million it got back in additional Medi-Cal dollars. To make up for the loss, it secured the nearly $28 million in grant revenue — earning nearly $6.9 million from the program, its commissioned tax audit shows.

Cedars-Sinai spokesperson Duke Helfand acknowledged the benefit from the taxing scheme but said the health system effectively subsidizes Medi-Cal enrollees and incurs losses of more than $180 million annually serving those low-income patients. “Over the years, our teams at Cedars-Sinai have effectively managed our financial resources, enabling us to provide exceptional patient care,” Helfand said.

By comparison, the faith-based Adventist Health, which serves more poor people and operates roughly two dozen hospitals in California, Oregon, and Hawaii, paid $148 million in taxes in 2022 and reaped $401 million in additional Medi-Cal dollars through the program, according to its independent tax audit. It then contributed $3 million of that money to the charity.

These sorts of financing arrangements are under federal scrutiny. Officials with the Centers for Medicare & Medicaid Services have blasted “hold harmless” deals that can result in wealthier hospitals receiving enough money back that they ultimately wind up paying little or no tax at all.

“A health care-related tax cannot have a hold harmless provision that guarantees to return all or a portion of the tax back to the taxpayer,” Daniel Tsai, deputy administrator and director for the federal Medicaid agency, wrote in February.

Dave Regan, president of Service Employees International Union-United Healthcare Workers West, which represents hospital workers, has long lambasted California’s scheme as a ploy that lets wealthy hospitals siphon valuable health care dollars from smaller, rural hospitals that need more support for Medi-Cal patients.

“We believe the policies and practices of the hospital industry, in large part, contribute to the problems that Madera faced,” Regan said. “The hospital industry is richer than it’s ever been — and it’s being disingenuous, trying to get the public to fork over more money at a time when they have more money than they’ve ever had.”

California Hospital Association spokesperson David Simon defended the charity, saying it helps “hospitals provide health care services despite losses” from the tax.

Hospital leaders say exorbitant costs and inflation have created extreme financial woes. Last year, California’s hospitals paid at least $10 billion more for labor, supplies, and other expenses than the year before, according to state hospital finance data. And overall, they saw substantially smaller investment gains, reporting nearly $119 million in non-operating revenue compared with $6 billion the year before — a big blow to their financial cushion to ensure patient care.

The industry points out 200 hospitals had negative operating margins last year, yet KFF Health News found that, even before the pandemic, about 160 hospitals reported losing money in their operating budgets. Experts say the finding underscores the reality that hospitals operate on slim margins.

And, credit ratings agencies have recently upgraded the bonds of a number of hospitals and health systems, including Sutter Health in Northern California and Loma Linda University Medical Center in San Bernardino County.

“We just upgraded Sutter like two weeks ago, so it would be very hard-pressed, for me, to look at California and say California is looking bad,” said Kevin Holloran, a senior director at Fitch Ratings.

Some Democratic lawmakers agree that not all hospitals need a bailout. Instead, they favor targeted relief such as a $150 million loan program that Newsom signed into law earlier this month to help struggling hospitals.

“I’m not a big fan of writing everybody a check,” said Democratic Assemblymember Jim Wood, chair of the Health Committee, who says hospitals ought to be more transparent about their finances before state taxpayers give them any more money. “If you’re a hospital system that’s doing well, I don’t believe you should be getting any additional resources from the state.”

KFF Health News senior correspondent Bernard J. Wolfson contributed to this report.

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

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Secretary Xavier Becerra joined leaders from across the world in Geneva, Switzerland, for the 76th World Health Assembly to discuss global health priorities.

Cuando los antepasados de John Mestas se mudaron a Colorado hace más de 100 años para criar ovejas en el Valle de San Luis, “llegaron al paraíso”, contó.

“Había tanta agua que pensaron que nunca se acabaría”, dijo Mestas refiriéndose a la región agrícola en la cabecera del río Grande.

Ahora, décadas de sequía impulsada por el cambio climático, combinada con la sobre explotación de los acuíferos, están dejando al valle desesperadamente seco, y parece estar intensificando los niveles de metales pesados en el agua potable.

Al igual que un tercio de las personas que viven en este desierto alpino de gran altitud, Mestas depende de un pozo privado que extrae agua de un acuífero para beber. Y, al igual que muchos agricultores de la zona, usa la misma fuente para regar la alfalfa que alimenta a sus 550 vacas.

“Aquí, el agua lo es todo”, dijo.

Mestas, de 71 años, ahora es uno de los cientos de propietarios de pozos que participan en un estudio que aborda la pregunta: ¿Cómo afecta la sequía no solo a la cantidad, sino también a la calidad del agua?

El estudio, dirigido por Kathy James, profesora asociada en la Escuela de Salud Pública de Colorado, se centra en el arsénico en los pozos privados de agua potable. El arsénico, un carcinógeno que se encuentra naturalmente en el suelo, ha estado apareciendo en niveles crecientes en el agua potable del valle, según James.

En California, México y Vietnam, las investigaciones han relacionado el aumento de los niveles de arsénico en el agua subterránea con la sequía y la sobre explotación de los acuíferos.

A medida que el oeste lucha contra una mega sequía que ha durado más de dos décadas y los estados corren el riesgo de recortes en el agua del menguante río Colorado, el Valle de San Luis ofrece pistas sobre lo que el futuro puede deparar.

A nivel nacional, alrededor de 40 millones de personas dependen de pozos domésticos, estimó Melissa Lombard, investigadora en hidráulica del U.S. Geological Survey. Nevada, Arizona y Maine tienen el mayor porcentaje de usuarios de pozos domésticos —que oscilan entre aproximadamente un cuarto y una quinta parte de estos usuarios—, que utilizan agua con niveles elevados de arsénico, según encontró en un otro estudio.

Durante la sequía, el número de personas en los Estados Unidos continental expuestas a niveles elevados de arsénico en pozos domésticos podría aumentar de aproximadamente 2,7 millones a 4,1 millones, estimó Lombard utilizando modelos estadísticos.

Se ha comprobado que el arsénico afecta la salud a lo largo de la vida, comenzando con los espermatozoides y los óvulos, explicó James. Incluso una pequeña exposición, acumulada a lo largo de la vida de una persona, es suficiente para causar problemas de salud, agregó.

En un estudio anterior en el valle, James encontró que la exposición de por vida a niveles bajos de arsénico inorgánico en el agua potable, entre 10 y 100 microgramos por litro (µg/L), estuvo relacionada con un mayor riesgo de enfermedad coronaria. Otras investigaciones han vinculado la exposición crónica a niveles bajos de arsénico con hipertensión, diabetes y cáncer.

Las mujeres embarazadas y los niños corren un mayor riesgo de sufrir daños.

La Organización Mundial de la Salud establece el límite recomendado de arsénico en el agua potable en 10 µg/L, que también es el estándar de los Estados Unidos para los suministros públicos de agua. Pero las investigaciones han demostrado que, incluso a 5 µg/L, el arsénico está relacionado con tasas más altas de lesiones en la piel.

“Creo que es un problema del que mucha gente no está consciente”, dijo Lombard. “El cambio climático probablemente afectará la calidad del agua”, dijo, pero se necesita más investigación para comprender cómo y por qué.

Un foco de esperanza

El Valle de San Luis, que ha sido sede de una gran cantidad de investigación e innovación, es el lugar ideal para explorar esas preguntas, y posibles soluciones.

Conocido por sus impresionantes vistas montañosas y la cercanía al Parque y Reserva Nacional Great Sand Dunes, el valle abarca una región aproximadamente del tamaño de Massachusetts, convirtiéndolo en el valle alpino más grande de América del Norte.

Rico en herencia indígena, mexicana y española, contiene 500,000 acres de tierra de riego que producen papas, alfalfa para forraje y cebada para la cerveza de Coors. Es hogar de casi 50,000 personas, muchas de ellas trabajadores agrícolas y aproximadamente la mitad de ellas hispanas.

También es un lugar desafiante para vivir: los condados aquí se encuentran entre los más pobres del estado, y las tasas de diabetes, enfermedad renal y depresión son altas.

Dado que llueve muy poco, aproximadamente 7 pulgadas al año en promedio, los agricultores dependen de dos grandes acuíferos y de las cabeceras del río Grande, que continúa hacia México. El deshielo de las imponentes cordilleras de Sangre de Cristo y San Juan recarga el suministro cada primavera.

Sin embargo, a medida que el clima se calienta, hay menos nieve y el agua se evapora más rápidamente de lo normal tanto del suelo como de los cultivos. “Esta comunidad entera, esta cultura, se construyó en torno a la agricultura de riego”, dijo Cleave Simpson, senador estatal de Alamosa, republicano y agricultor de cuarta generación.

Pero desde 2002, el acuífero no confinado del valle ha perdido 1 millón de acres-pie de agua, o suficiente para cubrir 1 millón de acres de tierra con un pie de agua de profundidad, debido a la sequía persistente y el uso excesivo. Ahora las comunidades del valle enfrentan una fecha límite para reponer el acuífero, o enfrentar el cierre estatal de cientos de pozos de riego.

“Estamos una década adelante de lo que está sucediendo en el resto de Colorado” debido a la intensidad de la escasez de agua, dijo Simpson, quien administra el Río Grande Water Conservation District.

“Esto ya no es una sequía, esto es realmente la desertificación del Oeste“, dijo Simpson. Así es como los científicos describen una tendencia a largo plazo hacia la sequedad y aridez persistentes que solo puede detenerse abordando el cambio climático causado por los humanos.

James, quien es epidemióloga e ingeniera, ha estado estudiando las conexiones entre el clima y la salud en el valle durante los últimos 15 años. Descubrió que durante las tormentas de polvo en el Valle de San Luis, que se han vuelto más frecuentes, más personas llegan al hospital por ataques de asma. Y ha encuestado a los trabajadores agrícolas sobre cómo la sequía está afectando su salud mental.

En el estudio de los pozos domésticos, James se está centrando en el arsénico, que según dijo ha ido aumentando gradualmente en los pozos de agua potable del valle en los últimos 50 años. Los niveles de arsénico en el agua subterránea del Valle de San Luis son “considerablemente más altos que en muchas otras áreas de los Estados Unidos”, según James. También está investigando las disparidades étnicas, ya que un estudio mostró que los adultos hispanos tenían niveles más altos de arsénico en su orina que los adultos blancos no hispanos. (Las personas hispanas pueden ser de cualquier raza o combinación de razas).

Ahora, James tiene como objetivo analizar 1,000 pozos privados en el valle para explorar las conexiones entre la sequía, la calidad del agua y la salud. Hasta ahora, dijo que una pequeña proporción de los pozos muestra niveles elevados de metales pesados, incluyendo arsénico, uranio, tungsteno y manganeso, que se encuentran naturalmente en el suelo.

A diferencia de los suministros públicos de agua, los pozos domésticos privados no están regulados y pueden pasar años sin ser analizados. James ofrece pruebas de agua gratuitas y consultas sobre los resultados a los participantes. En el condado de Conejos, la hija de John Mestas, Angie Mestas, aprovechó la oportunidad de hacer una prueba gratuita, que costaría $195 en un laboratorio local.

Angie, maestra de 35 años, dijo que utilizó los ahorros de toda una vida para perforar un pozo de agua potable en su terreno, un campo abierto de hierba chamisa con vistas panorámicas a las Colinas de San Luis. Pero no beberá de este pozo hasta que se realicen pruebas de arsénico y E. coli, que son comunes en la zona.

Mientras espera los resultados de las pruebas, ha estado llevando barriles de agua de 5 galones desde la casa de su padre cada vez que pasa el fin de semana en su nueva carpa.

Amenaza sin olor ni color

Mientras tanto, Julie Zahringer, cuya familia se estableció en el valle desde España hace casi 400 años, ha estado observando las tendencias de calidad del agua de primera mano.

Zahringer, de 47 años, creció conduciendo un tractor en el rancho de su abuelo cerca de San Luis, la ciudad más antigua de Colorado, y pasó tiempo en el laboratorio con su madre, que es científica.

Como química y directora de laboratorio de SDC Laboratory en Alamosa, Zahringer analiza el agua potable privada y pública en el valle. Estimó que el 25% de los pozos privados analizados por su laboratorio muestran niveles elevados de arsénico. “Es incoloro, es inodoro”, dijo Zahringer. “La mayoría de las familias no saben si están bebiendo arsénico”.

Para ella, el vínculo con el clima parece claro: durante los períodos de sequía, un pozo que normalmente tiene alrededor de 10 µg/L de arsénico puede fácilmente duplicar o triplicar su concentración, dijo. Una posible razón es que hay menos agua para diluir los contaminantes naturales del suelo, aunque también intervienen otros factores.

Dijo que los niveles de arsénico solían ser bastante estables, pero después de 20 años de sequía, fluctúan de manera descontrolada.

“Ahora, cada vez más rápido, veo el mismo pozo que analicé hace tres años, y ni siquiera parece el mismo” porque los niveles de contaminantes han aumentado tanto, dijo Zahringer, quien también es miembro de la Comisión de Control de Calidad del Agua de Colorado.

En su propio pozo de agua potable, el nivel de arsénico aumentó de 13 a 20 µg/L este año, dijo.

Las observaciones de Zahringer son importantes historias de primera mano. James tiene como objetivo explorar, en un estudio científico riguroso con una muestra representativa de pozos y datos geoquímicos extensos, la prevalencia del arsénico y su conexión con la sequía.

La investigación todavía se encuentra en etapas iniciales, pero los científicos tienen varias hipótesis sobre cómo la sequía podría afectar el arsénico en el agua potable. En el Valle de San Joaquín, un importante centro agrícola en California, la investigación liderada por el experto en hidráulica Ryan Smith relacionó el aumento de arsénico en las aguas subterráneas con el “hundimiento del terreno”, un fenómeno documentado por primera vez en Vietnam.

El hundimiento del terreno, cuando el suelo se hunde debido a la sobreexplotación de los acuíferos, parece liberar arsénico de la arcilla hacia el agua, dijo Smith, profesor asistente de la Universidad Estatal de Colorado. En California, la sobreexplotación estaba fuertemente correlacionada con la sequía, agregó.

Sin embargo, otros factores, como la profundidad de un pozo, también juegan un papel: otro estudio del mismo sistema de acuíferos en California encontró que mientras el arsénico aumentaba en las aguas subterráneas más profundas, disminuía en las aguas más superficiales debido, en parte, a la oxidación.

Smith está trabajando ahora con James en el estudio del Valle de San Luis, donde espera que una gran cantidad de datos geoquímicos brinden más respuestas. Mientras tanto, los líderes comunitarios en el valle se están adaptando de formas impresionantes e innovadoras, dijo James.

Zahringer dijo que si el arsénico aparece en un pozo privado, anima a los clientes a instalar un sistema de filtración de agua por ósmosis inversa en el fregadero de la cocina. El equipo cuesta alrededor de $300 con un proveedor externo, aunque los filtros que cuestan menos de $50 pueden necesitar cambiarse cada seis a 18 meses, dijo.

Aquellas personas que tratan su agua para eliminar el arsénico deben seguir realizando pruebas cada seis meses para asegurarse de que los filtros sean efectivos, agregó Zahringer. SDC Laboratory ofrece una prueba de arsénico por $25.

“A las personas no les gusta analizar el agua porque sabe bien y sus abuelos la bebían”, dijo. Pero “la solución es tan fácil”.

Una campaña de calidad del agua en 2009, liderada por el Consejo del Ecosistema del Valle de San Luis, también encontró niveles elevados de arsénico en los pozos a lo largo del valle. Como parte de sus actividades, la organización sin fines de lucro trabajó con agentes inmobiliarios para asegurarse de que los pozos domésticos sean analizados antes de que alguien compra una casa.

Eso es lo que hizo Sally Wier cuando compró una casa hace cinco años en una parcela de 8 acres en el condado de Rio Grande, rodeada de campos de cebada y alfalfa. La primera vez que probó su pozo, el nivel de arsénico era de 47 µg/L, casi cinco veces más del límite establecido por la Agencia de Protección Ambiental (EPA). Wier instaló un sistema de filtración de agua por ósmosis inversa, pero dijo que el nivel de arsénico aumenta antes de que cambie los filtros cada pocos meses.

“Me pone muy ansiosa”, dijo Wier, de 38 años. “Probablemente estoy ingiriendo arsénico. Eso no es bueno para la salud a largo plazo”.

Wier es una de muchas personas que trabajan en soluciones innovadoras para la escasez de agua. Como gerente de proyectos de conservación en Colorado Open Lands, trabajó en un acuerdo mediante el cual se le pagó a un agricultor local, Ron Bowman, para que dejara de regar su granja de 1,800 acres. Según Wier, este acuerdo marca la primera vez en el país que se utiliza un acuerdo de uso de conservación para salvar agua subterránea y reponer acuíferos.

Canalizando dinero hacia una solución

En el condado de Costilla, el Move Mountains Youth Project ha estado pagando a agricultores locales, a través de una subvención gubernamental, para que conviertan una parte de sus tierras en cultivos de vegetales en lugar de cultivos de alfalfa que requieren mucha agua.

Los agricultores luego entrenan a los jóvenes para cultivar brócoli, espinaca y frijoles bolita, que se venden en una tienda de comestibles local. El proyecto tiene como objetivo fomentar la próxima generación de agricultores y “combatir la diabetes” al proporcionar alimentos cultivados localmente, dijo la directora ejecutiva Shirley Romero Otero.

Su grupo trabajó con tres agricultores el verano pasado y planea hacerlo con siete esta temporada, si hay suficiente agua disponible, contó.

En otro esfuerzo, agricultores como los Mestas se están gravando a sí mismos para extraer agua de sus propios pozos de riego. Y Simpson, del Distrito de Conservación del Agua del Río Grande, recientemente aseguró $30 millones en fondos federales para apoyar la conservación del agua. El plan incluye pagar a los agricultores $3,000 por acre-pie de agua para retirar permanentemente sus pozos de riego.

Dado que el arsénico no se limita a los pozos privados, también han respondido las agencias públicas: la ciudad de Alamosa construyó una nueva planta de tratamiento de agua en 2008 para cumplir con los estándares federales de arsénico.

En 2020, el estado de Colorado demandó a una granja de hongos en Alamosa por exponer a sus trabajadores al arsénico presente en el agua de grifo.

En la comunidad de casas móviles High Valley Park en el condado de Alamosa, un pozo que abastece a 85 personas ha excedido los niveles legales de arsénico desde 2006, cuando EPA endureció su estándar de 50 a 10 µg/L. En la prueba más reciente en febrero, la concentración fue de 19 µg/L.

En una tarde de abril, cuatro niños saltaban en un trampolín y se perseguían unos a otros alrededor de un árbol. “Tío, tengo sed y no quedan botellas de agua”, dijo uno de los niños, sin aliento.

El pozo abastece a 28 hogares. Sin embargo, los inquilinos de cinco viviendas han afirmado que no han estado bebiendo el agua durante años, no por el arsénico, del cual algunos no estaban conscientes, sino porque el agua a menudo sale de color marrón.

Eduardo Rodríguez, de 29 años, quien trabaja en excavación, dijo que compra dos cajas de botellas de agua cada semana para su esposa y sus cinco hijos.

“Esto debe arreglarse”, afirmó.

“El agua es terrible”, coincidió Craig Nelson, de 51 años, quien ha vivido en el parque de casas móviles durante dos años. “No se puede tomar”. Debido a que el pozo abastece al menos a 25 personas, está regulado por el estado.

El propietario del terreno, Rob Treat, de Salida, compró la propiedad en febrero de 2022 por casi medio millón de dólares. Cumplir con los estándares federales en cuanto al contenido de arsénico ha sido difícil, afirmó, porque sus niveles fluctúan cuando los agricultores cercanos extraen agua del acuífero para regar sus cultivos.

Treat estaba utilizando cloro para convertir un tipo de arsénico en una forma más tratable. Sin embargo, si agregaba demasiado cloro, esto creaba subproductos tóxicos, lo cual también llamó la atención de los reguladores. Bajo presión del estado, comenzó a mejorar el sistema de tratamiento de agua en mayo, con un costo de $150,000. Para cubrir los gastos, planea aumentar el alquiler mensual de $250 a $300 por lote.

“Si el estado se mantuviera al margen”, se quejó, “podríamos proporcionar viviendas asequibles”.

Mientras tanto, John Mestas aún está esperando los resultados de su pozo de agua potable.

Cuando regresa de viajar para administrar su rebaño de ganado, “lo primero que hago cuando entro a la casa es beber dos vasos de agua”, dijo. “Eso es lo que extraño, mi agua y mis perros. Saltan sobre mí mientras tomo mi agua. No sé quién está más feliz, si yo bebiendo el agua o ellos saltando”.

Este artículo fue apoyado por The Water Desk, una iniciativa de periodismo independiente con sede en el Center for Environmental Journalism de la Universidad de Colorado-Boulder.

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

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Bozeman, Montana. — Sara Young empacó una maleta con artículos esenciales, agarró a sus hijos y huyó de su hogar a un refugio: una casa vieja pintada de verde, camuflada en un vecindario en esta ciudad del suroeste de Montana.

La casa no parecía un refugio para víctimas de violencia doméstica; estaba escondida a simple vista. Young no podía darle la dirección a nadie. La clandestinidad le daba una sensación de seguridad. Pero para su compañera de cuarto, una madre joven, era difícil cuidar a su bebé sin su familia allí para ayudarla.

Algunas residentes no podían ir a trabajar porque no tenían auto. Varias intentaban escaparse a la noche para alejarse por un momento de los toques de queda, las ventanas cerradas y los sistemas de seguridad.

“Estábamos ahí porque necesitábamos estar protegidas”, dijo Young. “Para mí, era un lugar cómodo. Para otras, era como estar en una prisión”.

Por mucho tiempo, el estándar para este tipo de refugios, también llamados casas de acogida, ha sido alojar a las víctimas de violencia doméstica en casas ocultas con direcciones secretas.

Este modelo surge de la idea de que la clandestinidad protege a las sobrevivientes de sus abusadores. Pero los directores de estos refugios han dicho que cada vez es más difícil mantener ocultas las ubicaciones, y que esta estrategia puede aislar a las víctimas.

Ahora, algunos refugios están transicionando a un modelo abierto. Esta primavera, Haven, una organización sin fines de lucro de Bozeman, terminó la construcción de un campus que reemplazó a la casa verde, ubicado a minutos de una carretera principal que conduce a la ciudad. El nombre de la organización está escrito en letras llamativas al costado del nuevo edificio.

Hay espacio para un jardín comunitario, clases de yoga y un lugar para que las residentes reciban a sus amigos. Está a poca distancia a pie de supermercados y una escuela primaria, y bordea un parque urbano que es ideal para pasear perros o pescar.

Erica Coyle, directora ejecutiva de Haven, dijo que por muchos años el antiguo refugio de la organización fue un secreto no tan secreto en la ciudad de más de 54,000 personas.

“Nuestro trabajo no es rescatar a un sobreviviente y mantenerlo escondido”, dijo Coyle. “Lo que debemos estar haciendo, como comunidades y como movimiento social, es escuchar a los sobrevivientes cuando nos dicen: ‘El aislamiento de los refugios es un gran obstáculo para mí’”.

Estos cambios en el modelo de los refugios para víctimas de violencia doméstica se están expandiendo por todo el país. En los últimos años, organizaciones en Utah y Colorado construyeron refugios públicos que proveen recursos in situ, como servicios legales.

Una organización de asistencia a víctimas en la ciudad de Nueva York ha pasado años sentando las bases para crear refugios que permitan a los residentes invitar a amigos y familiares.

Los estados rurales, como Montana, parecen estar adoptando el modelo de los refugios abiertos más rápido que las zonas urbanas. Kelsen Young, directora ejecutiva de la organización Montana Coalition Against Domestic and Sexual Violence, explicó que es mucho más difícil mantener un lugar secreto en pequeños pueblos donde todos se conocen.

Los refugios de Missoula y Helena adoptaron el modelo abierto hace años y, según Young, ya están en marcha planes para hacer lo mismo en otras ciudades.

Gina Boesdorfer, directora ejecutiva del Friendship Center en Helena, dijo que los refugios ocultos obligan a las sobrevivientes a permanecer escondidas en vez de apoyarlos en sus propias comunidades y permitir que sigan sus rutinas cotidianas.

“Demuestra claramente la falta de sistemas de apoyo y recursos en las comunidades”, dijo Boesdorfer. “[Los refugios ocultos] siguen colocando la carga en las víctimas y no en los abusadores”.

No hay un registro de cuántos refugios han adoptado el modelo abierto. Lisa Goodman, psicóloga y profesora del Boston College que estudia cómo mejorar los sistemas de apoyo para sobrevivientes de violencia, dijo que la definición de “abierto” en referencia a los refugios varía.

Algunos simplemente dejaron de tratar de ocultar sus direcciones, permitiendo a los residentes obtener transporte para ir a trabajar mientras otros espacios están fuera de los límites. Otros refugios permiten a los residentes recibir visitas u ofrecen espacios comunitarios para reuniones.

“Tal como solía ser el movimiento contra la violencia doméstica, [estos cambios] están empezando desde abajo”, dijo Goodman.

Los primeros refugios fueron establecidos por mujeres que acogían a otras mujeres en sus casas. A partir de la década de 1970, se empezaron a construir refugios bajo el supuesto de que los lugares secretos eran más seguros.

Pero a medida que fueron creciendo para alojar a más personas, los refugios ocultos se volvieron cada vez menos prácticos, ya que muchas sobrevivientes trabajan y tienen hijos que van a la escuela. Por no mencionar el desafío que presentan los avances tecnológicos que permiten rastrear la ubicación de un teléfono celular por GPS, por ejemplo.Goodman dijo que no existe un registro nacional de refugios que estén considerando el modelo abierto. Cada refugio debe tomar en cuenta preguntas importantes, incluyendo cómo evaluar a las visitas para asegurarse de que no sean una amenaza; cómo proteger a una sobreviviente cuyo abusador todavía anda suelto, y cómo mantener un equilibrio entre la independencia y la privacidad de las que quieren mantenerla.

Pero después de décadas de valorar la clandestinidad, salir a la luz pública no siempre es fácil.

En 2021, un refugio anteriormente escondido en el valle de Vail de Colorado — un grupo de pueblos rurales ocultos entre las mejores estaciones de esquí del mundo — abrió una nueva sede. La propiedad comprende pequeños apartamentos y servicios que ofrecen recursos para la salud mental, asistencia legal y ayuda con asuntos de vivienda, para residentes y no residentes. 

Sheri Mintz, directora ejecutiva de Bright Future Foundation, propietaria del refugio, dijo que tomó tiempo lograr que la gente aceptara el nuevo modelo. Algunos activistas en contra de la violencia doméstica temían que la transición pusiera en riesgo la seguridad de las sobrevivientes.

Respondiendo a estas preocupaciones, la organización actualizó el sistema de seguridad del nuevo refugio. Se hicieron recorridos de las instalaciones con policías para verificar que el lugar fuera seguro y crear planes de respuesta en caso de cualquier problemas de seguridad.

“Hasta ahora, no hemos tenido ningún incidente grave”, dijo Mintz. “Siempre hemos tenido clientes que pueden ser víctimas de acoso. No veo que eso haya aumentado o cambiado de alguna manera desde que estamos en este refugio público”.

En la ciudad de Nueva York, Olga Rodríguez-Vidal, vicepresidenta de refugios para víctimas de violencia doméstica de Safe Horizon, dijo que su organización todavía está trabajando para que sus patrocinadores apoyen el modelo abierto.

Los directores de Safe Horizon quieren tener una combinación de viviendas de emergencia privadas para las personas que están saliendo de una crisis y otras opciones para los que estén en alojamientos provisionales y quieran recibir visitas.

“Esto es muy nuevo e innovador y tal vez nos da un poco de miedo”, dijo Rodríguez-Vidal.

En Bozeman, Haven tiene dos edificios en su nuevo campus. El primero es un centro de recursos con oficinas para empleados, servicios para clientes y espacio para eventos comunitarios. Hay cámaras conectadas a un sistema de seguridad que pueden identificar las placas de abusadores conocidos, y hay controles de seguridad con cada visitante.

El nuevo sitio permite tener sistemas de seguridad mucho más avanzados que los que se podían usar cuando la organización estaba tratando de “camuflarse” en el vecindario, dijo Coyle.

Por dentro, el edificio está diseñado para que las personas que han experimentado traumas se sientan seguras. Cada ventana tiene una vista de lo que serán los jardines de la propiedad. Una parte del edificio incluye salas de terapia para adultos. Una de ellas tiene una vista a la sala de juegos para niños, así los padres pueden recibir ayuda sabiendo que sus hijos están a salvo.

La vivienda de Haven, a poca distancia a pie del centro principal, está fuera del alcance de personas que no trabajan o residen allí, lo cual permite mantener la privacidad de los residentes. Las sobrevivientes eligen cuándo y si quieren participar en eventos organizados en el edificio de al lado. El sendero de entrada a la vivienda de las residentes está cercado y es privado.

Sara Young es una de las sobrevivientes que opinó sobre el diseño del nuevo refugio de Haven y dijo que en general está contenta con los cambios. Le alegra que los residentes tendrán más espacio que el que ella tenía en su refugio, y que habrá más acceso a los distintos servicios que ofrece la organización.

Pero a Young no termina de convencerle la idea de un refugio público. En el refugio que la acogió,  se sentía segura sabiendo que la dirección no era pública y que su ex no la conseguiría. Le gustaba que los vecinos del refugio no sabían por qué estaba allí; no quería sentirse juzgada por haber estado en una relación abusiva. 

Pero Young reconoce que el hecho de tener una dirección pública no la habría disuadido de alojarse en el refugio.

“Estaba desesperada, estoy segura de que habría ido igual”, dijo Young, y agregó que no tendría la estabilidad que siente hoy en día sin el apoyo y la ayuda que recibió en el refugio. “Pero no quería que nadie lo supiera”.

Por otra parte, dijo Young, tal vez el modelo del refugio público contribuya a reducir el estigma que ella temía y ayude a que más personas entiendan que cualquier persona puede encontrarse en una relación abusiva, y qué hacer en esos casos. 

Young estará pendiente de cómo el modelo sigue desarrollándose.

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BOZEMAN, Mont. — Sara Young packed a bag of essentials, gathered her kids, and fled her home to a refuge: an old, green house that blended in with the neighborhood in this southwestern Montana city.

Nothing about the house identified it as a domestic violence shelter — it was hidden in plain sight. Young wasn’t allowed to give anyone the address. The secrecy made her feel safe. But her roommate, a young mom, struggled to care for her baby without her family there to help. Some residents couldn’t get to work because they didn’t have a car. Several housemates tried to sneak out at night for a break from curfews, locked windows, and alarm systems.

“We were there because we needed to be kept safe,” Young said. “For me, it was comfortable. For them, it felt like being in prison.”

The long-held standard for domestic violence shelters has been to keep residents in hiding at undisclosed addresses. That model stems from the belief that secrecy keeps survivors safe from their abusers. But domestic violence shelter directors have said keeping their locations secret has gotten more complicated, and the practice can isolate residents.

Now, some shelters are moving into the open. This spring, the Bozeman nonprofit Haven finished construction of a campus minutes off a main road leading into town that replaced the green house. Sun-catching letters display the nonprofit’s name on the side of the nonprofit’s new building.

There’s space for a community garden, yoga classes, and a place for residents to host friends. It’s within walking distance of grocery stores and an elementary school, and it borders a city park that’s a go-to spot for people to take their dogs or to fish.

Erica Coyle, executive director of Haven, said the nonprofit’s old shelter had been a not-so-well-kept secret for years in the city of more than 54,000 people. “Our job isn’t to rescue a survivor and keep them hidden away,” Coyle said. “What we need to be doing overall, as communities and as a movement, is listening to survivors and when they say, ‘The isolation of staying in a shelter is a big barrier for me.’”

Similar changes are percolating across the nation. In recent years, organizations in Utah and Colorado built public-facing shelters that connect clients to resources on-site such as legal services. A victim assistance organization in New York City has spent years laying the groundwork to create shelters that allow residents to invite friends and family over.

Rural states like Montana seem to be making the shift to open shelters ahead of urban areas. Kelsen Young, executive director of Montana Coalition Against Domestic and Sexual Violence, said that’s likely because it’s harder to keep a location secret in towns where everyone knows everybody. Shelters in Missoula and Helena made the shift years ago, and she said plans are in the works elsewhere.

Gina Boesdorfer, executive director of the Friendship Center in Helena, said hidden sites force survivors into hiding instead of supporting people in their communities and regular routines.

“It really highlights a lack of other supports and resources in a community,” Boesdorfer said. “That still places the burden on the victim rather than placing the burden on the offender.”

No one is tracking how many shelters have shifted to an open model. Lisa Goodman, a psychologist and professor at Boston College who studies how to improve systems for survivors of violence, said shelters’ definition of “open” varies.

Some open shelters simply stopped trying to hide their address, allowing residents to get rides to work while buildings remain off-limits. Others allow residents to have visitors in their quarters or offer community spaces for gatherings.

“As the domestic violence movement used to be, it’s sort of bubbling up from the bottom,” Goodman said.

The earliest havens arose when women took other women into their homes. Starting in the 1970s, shelters were built on the assumption that secrecy is safest. But as shelters grew to serve more people, staying hidden became less practical as more survivors work and have kids who attend school. Not to mention the challenge of technological advances like phone GPS tracking.

Goodman said there is no national guide for shelters considering an open model. Each needs to weigh big questions, such as: How do shelters screen visitors to make sure they’re not a threat? How do they protect a survivor whose abuser is still loose and dangerous? And how do they balance residents’ independence with confidentiality for those who want it?

Moving into the open isn’t always an easy sell after decades of emphasizing secrecy.

In 2021, a once-hidden shelter in Colorado’s Vail Valley, a cluster of rural towns tucked amid world-class ski resorts, opened a new facility. The property comprises small apartments alongside services such as behavioral health, housing, and legal aid for residents and nonresidents alike.

Sheri Mintz, CEO of the Bright Future Foundation, which owns the shelter, said it took time to build buy-in. Some advocates against domestic violence worried the transition would risk survivors’ safety.

In response, the organization upgraded the shelter’s security system well beyond its former site. Police officers toured the facility to check for safety and create response plans for security breaches.

“So far, we haven’t had any serious incidents,” Mintz said. “We have always had a situation where there are clients that might be victims of stalking. I don’t see that that has increased or changed in any way since we’re in this public-facing shelter.”

In New York City, Olga Rodriguez-Vidal, vice president of domestic violence shelters for Safe Horizon, said the victim assistance organization is still working to get funders on board with an open model.

There, the leadership hopes to create a mix of confidential emergency housing for people leaving a crisis, while allowing tenants in more transitional housing to decide whether they want visitors.

“This is very new and innovative and maybe a little scary,” Rodriguez-Vidal said.

In Bozeman, Haven has two buildings on its new campus. The first is a resource hub with employee offices, services for clients, and space for community events. Cameras attached to a security system can flag license plates registered to known abusers, and every visitor is screened before being buzzed in.

The new site allows for much more advanced security systems compared with what the nonprofit could use when trying to blend in with the neighborhood, Coyle said.

Inside, the building is designed to feel like a safe space for people who have experienced trauma. Each window has a view of what will be the property’s gardens. One side of the building includes therapy rooms for adults. One of those rooms has a view of a kids’ playroom so parents can get help while knowing their children are safe.

Haven’s housing, a short walk from the main hub, is still off-limits to anyone but staff members and residents to keep that space private. Survivors choose when and if they want to interact through events hosted next door. The driveway to residents’ housing is gated and private.

Sara Young was among the survivors who weighed in on the design of Haven’s new shelter and, overall, she’s excited about the changes. She’s happy there will be more space for residents compared with the house that was her refuge and that there’s easier access to services.

But Young is a little unsure about the idea of a public-facing shelter. She felt safe knowing the address wasn’t public for her ex to see. She liked that shelter neighbors didn’t necessarily know why she was there; she didn’t want to feel judged for having been in an unsafe relationship. But a public address wouldn’t have kept Young from showing up.

“I was desperate, I’m sure I would have gone,” Young said, adding that she wouldn’t have the stability she feels today without that help. “But I didn’t want anyone to know.”

Then again, Young said, maybe having the shelter out in the open will help whittle the judgment she feared, and help more people understand that anyone can find themselves trapped in unsafe relationships, and what to do when that happens.

She plans to watch how it plays out.

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When John Mestas’ ancestors moved to Colorado over 100 years ago to raise sheep in the San Luis Valley, they “hit paradise,” he said.

“There was so much water, they thought it would never end,” Mestas said of the agricultural region at the headwaters of the Rio Grande.

Now decades of climate change-driven drought, combined with the overpumping of aquifers, is making the valley desperately dry — and appears to be intensifying the levels of heavy metals in drinking water.

Like a third of people who live in this high alpine desert, Mestas relies on a private well that draws from an aquifer for drinking water. And, like many farmers there, he taps an aquifer to water the alfalfa that feeds his 550 cows.

“Water is everything here,” he said.

Mestas, 71, is now one of the hundreds of well owners participating in a study that tackles the question: How does drought affect not just the quantity, but the quality, of water?

The study, led by Kathy James, an associate professor at the Colorado School of Public Health, focuses on arsenic in private drinking wells. Arsenic, a carcinogen that occurs naturally in soil, has been appearing in rising levels in drinking water in the valley, she said. In California, Mexico, and Vietnam, research has linked rising arsenic levels in groundwater to drought and the overpumping of aquifers.

As the West grapples with a megadrought that has lasted more than two decades, and states risk cutbacks in water from the shrinking Colorado River, the San Luis Valley offers clues to what the future may hold.

Nationwide, about 40 million people rely on domestic wells, estimated Melissa Lombard, a research hydrologist for the U.S. Geological Survey. Nevada, Arizona, and Maine have the highest percentage of domestic well users — ranging from about a quarter to a fifth of well users — using water with elevated arsenic levels, she found in a separate study.

During drought, the number of people in the contiguous U.S. exposed to elevated arsenic from domestic wells may rise from about 2.7 million to 4.1 million, Lombard estimated, using statistical models.

Arsenic has been shown to affect health across the human life span, beginning with sperm and eggs, James said. Even a small exposure, added up over the course of a person’s life, is enough to cause health problems, she said.

In a previous study in the valley, James found that lifetime exposure to low levels of inorganic arsenic in drinking water, between 10 and 100 micrograms per liter, or µg/L, was linked to a higher risk of coronary heart disease. Other research has tied chronic exposure to low-level arsenic to hypertension, diabetes, and cancer. Pregnant women and children are at greater risk for harm.

The World Health Organization sets the recommended limit on arsenic in drinking water at 10 µg/L, which is also the U.S. standard for public water supplies. But research has shown that, even at 5 µg/L, arsenic is linked to higher rates of skin lesions.

“I think it’s a problem that a lot of people are not aware of,” Lombard said. “Climate change is probably going to impact water quality,” she said, but more research is needed to understand how and why.

A Hotbed of Hope

The San Luis Valley, which has hosted a wealth of research and innovation, is the ideal place to explore those questions — and potential solutions.

Known for its stunning mountain views and the nearby Great Sand Dunes National Park and Preserve, the valley spans a region roughly the size of Massachusetts, making it North America’s largest alpine valley. Rich in Indigenous, Mexican, and Spanish heritage, the valley contains 500,000 acres of irrigated land producing potatoes, alfalfa for hay, and beer barley for Coors. It’s home to nearly 50,000 people, many of them farmworkers and about half of them Hispanic. It’s also a challenging place to live: Counties here rank among the poorest in the state, and rates of diabetes, kidney disease, and depression run high.

Since it rains very little, about 7 inches a year on average, farmers rely on two large aquifers and the headwaters of the Rio Grande, which continues on to Mexico. Snowmelt from the looming Sangre de Cristo and San Juan mountain ranges recharges the supply each spring. But as the climate warms, there’s less snow, and water evaporates more quickly than usual from the ground and crops.

“This entire community, this culture, was built around irrigated agriculture,” said state Sen. Cleave Simpson of Alamosa, a Republican and a fourth-generation farmer. But since 2002, the valley’s unconfined aquifer has lost 1 million acre-feet of water — or enough to cover 1 million acres of land in water 1 foot deep — due to persistent drought and overuse. Now the communities in the valley face a deadline to replenish the aquifer, or face a state shutdown of hundreds of irrigation wells.

“We’re a decade ahead of what’s happening in the rest of Colorado” because of the intensity of water scarcity, said Simpson, who manages the Rio Grande Water Conservation District.

“This is not drought anymore — this is truly the aridification of the West,” Simpson said. That’s how scientists are describing a long-term trend toward persistent dryness that can be stopped only by addressing human-caused climate change.

James, who is an epidemiologist and engineer, has been studying links between climate and health in the valley for the past 15 years. She found that during dust storms in the San Luis Valley, which have been growing more frequent, more people visit the hospital for asthma attacks. And she has surveyed farmworkers on how drought is affecting their mental health.

In the domestic well study, James is focusing on arsenic, which she said has been gradually increasing in valley drinking wells over the past 50 years. Arsenic levels in San Luis Valley groundwater are “markedly higher than [in] many other areas of the U.S.,” according to James. She is also investigating ethnic disparities, as one study there showed Hispanic adults had higher levels of arsenic in their urine than non-Hispanic white adults did. (Hispanic people can be of any race or combination of races.)

James now aims to test 1,000 private wells in the valley to explore the connections between drought, water quality, and health. So far, she said, a small proportion of wells show elevated levels of heavy metals, including arsenic, uranium, tungsten, and manganese, which occur naturally in the soil. Unlike public water supplies, private domestic wells are not regulated, and they may go untested for years. James is offering participants free water testing and consultation on the results.

In Conejos County, John Mestas’ daughter, Angie Mestas, jumped at the chance for a free test, which would cost $195 at a local lab. Angie, a 35-year-old schoolteacher, said she used a lifetime of savings to drill a drinking well on her plot of land, a wide-open field of chamisa with sweeping views of the San Luis Hills. But she won’t drink from it until she tests for arsenic and E. coli, which are common in the area. As she awaits test results, she has been hauling 5-gallon jugs of water from her father’s house each time she spends the weekend at her newly constructed yurt.

A Colorless, Odorless Threat

Meanwhile, Julie Zahringer, whose family settled in the valley from Spain nearly 400 years ago, has been watching water-quality trends firsthand. Zahringer, 47, grew up driving a tractor on her grandfather’s ranch near San Luis, Colorado’s oldest town — and hanging out in the lab with her mother, a scientist.

As a chemist and laboratory director of SDC Laboratory in Alamosa, Zahringer tests private and public drinking water in the valley. She estimated that 25% of the private wells tested by her lab show elevated arsenic.

“It’s colorless, it’s odorless,” Zahringer said. “Most families don’t know if they’re drinking arsenic.”

To Zahringer, the link to climate seems clear: During dry periods, a well that usually hovers around 10 µg/L of arsenic may easily double or triple in concentration, she said. One possible reason is that there’s less water to dilute the natural contaminants in the soil, though other factors are at play. The arsenic levels used to be fairly stable, she said, but after 20 years of drought, they’re fluctuating wildly.

“Now, more and more rapidly, I’m seeing the same well that I just tested three years ago — it doesn’t even look like the same well” because levels of contaminants have risen so much, said Zahringer, who also serves as a member of the Colorado Water Quality Control Commission. At her own drinking well, the arsenic level jumped from 13 to 20 µg/L this year, she said.

Zahringer’s observations are important firsthand anecdotes. James aims to explore, in a rigorous scientific study with a representative sample of wells and extensive geochemical data, the prevalence of arsenic and its connection to drought.

Research is still in the early stages, but scientists have several hypotheses for how drought could affect arsenic in drinking water.

In the San Joaquin Valley, a major agricultural hub in California, research led by hydrologist Ryan Smith linked rising arsenic in groundwater to “land subsidence,” a phenomenon first documented in Vietnam.

Land subsidence — when the ground sinks due to aquifer overpumping — appears to release arsenic from the clay into the water, said Smith, an assistant professor at Colorado State University. In California, the overpumping was strongly correlated to drought, he said.

However, other factors, such as how deep a well is, also play a role: Another study of the same California aquifer system found that while arsenic increased in deeper groundwater, it decreased in shallower water due in part to oxidation.

Smith is now working with James in the San Luis Valley study, where he hopes a wealth of geochemical data will offer more answers.

Meanwhile, community leaders in the valley are adapting in impressive and innovative ways, James said.

Zahringer said if arsenic shows up in a private well, she encourages clients to install reverse osmosis water filtration at the kitchen sink. The equipment costs about $300 from an outside supplier, though filters costing less than $50 may need to be changed every six to 18 months, she said. People who treat their water for arsenic should continue to test every six months to make sure the filters are effective, said Zahringer. SDC Laboratory offers an arsenic test for $25.

“People don’t want to test their water because it tastes good and their grandpa drank it,” she said. But “the cure for it is so easy.”

A water-quality campaign in 2009, led by the San Luis Valley Ecosystem Council, also found elevated arsenic in wells across the valley. As part of its outreach, the nonprofit worked with real estate agents to make sure that domestic wells are tested before someone buys a home.

That’s what Sally Wier did when she bought a house five years ago on an 8-acre plot in Rio Grande County surrounded by fields of barley and alfalfa. The first time she tested her well, the arsenic level was 47 µg/L, nearly five times the EPA’s limit. Wier installed a reverse osmosis water filtration system, but she said the arsenic level rises before she changes the filters every few months.

“It makes me really anxious,” said Wier, 38. “I’m probably ingesting arsenic. That is not good for long-term health.”

Wier is one of many people working on innovative solutions to the water shortage. As a conservation project manager for Colorado Open Lands, she worked on a deal by which a local farmer, Ron Bowman, was paid to stop irrigating his 1,800-acre farm. The deal marks the first time in the country that a conservation easement has been used to save groundwater for aquifer replenishment, Wier said.

Funneling Money Toward a Solution

In Costilla County, the Move Mountains Youth Project has been paying local farmers, through a government grant, to convert a portion of their land to grow vegetables instead of water-intensive alfalfa. Farmers then train youth to grow crops like broccoli, spinach, and bolita beans, which are sold at a local grocery store. The project aims to nurture the next generation of farmers, and “beat diabetes” by providing locally grown food, said executive director Shirley Romero Otero. Her group worked with three farmers last summer and plans to work with seven this season, if enough water is available, she said.

In another effort, farmers like the Mestas are taxing themselves to draw water from their own irrigation wells. And Simpson, of the Rio Grande Water Conservation District, recently secured $30 million in federal money to support water conservation. The plan includes paying farmers $3,000 per acre-foot of water to permanently retire their irrigation wells.

Since arsenic is not limited to private wells, public agencies have responded, too: The city of Alamosa built a new water treatment plant in 2008 to bring its arsenic levels into compliance with federal standards. In 2020, the state of Colorado sued an Alamosa mushroom farm for exposing its workers to arsenic in tap water.

At the High Valley Park mobile home community in Alamosa County, a well serving 85 people has exceeded legal arsenic levels since 2006, when the Environmental Protection Agency tightened its standard from 50 to 10 µg/L. At the most recent test in February, the concentration was 19 µg/L.

On an April afternoon, four children bounced on a trampoline and chased one another up a tree.

“Uncle, I’m thirsty and there’s no bottled water left,” said one child, catching her breath.

The well serves 28 households. But tenants from five homes said they haven’t been drinking the water for years, not because of arsenic — which some said they were not aware of — but because the water often comes out brown.

Eduardo Rodriguez, 29, who works in excavation, said he buys two cases of bottled water every week for his wife and five children.

“It needs to be fixed,” he said.

“The water sucks,” agreed Craig Nelson, 51, who has lived in the mobile home park for two years. “You don’t drink it.” Because the well serves at least 25 people, it is regulated by the state.

Landlord Rob Treat, of Salida, bought the property in February 2022 for nearly half a million dollars. Getting arsenic within federal standards has been difficult, he said, because arsenic levels fluctuate when nearby farmers tap the aquifer to irrigate their crops. Treat was using chlorine to convert one kind of arsenic into a more treatable form. But if he added too much chlorine, he said, that created its own toxic byproducts, which have also drawn regulators’ attention.

Under pressure from the state, Treat began upgrading the water treatment system in May, at a cost of $150,000. To cover the cost, he said, he aims to raise the monthly rent from $250 to $300 per lot.

“If the state would stay out of it,” he grumbled, “we could supply affordable housing.”

Meanwhile, John Mestas is still awaiting results on his drinking well.

When he returns from traveling to manage his cattle herd, “the first thing I do whenever I walk in the house is drink me two glasses of this water,” Mestas said. “That’s the one thing I miss, is my water and my dogs. They’re jumping all over me while I’m drinking my water. I don’t know who’s happier, me drinking the water or them jumping on me.”

This article was supported by The Water Desk, an independent journalism initiative based at the University of Colorado-Boulder’s Center for Environmental Journalism.

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The rush in conservative states to ban abortion after the overturn of Roe v. Wade is resulting in a startling consequence that abortion opponents may not have considered: fewer medical services available for all women living in those states.

Doctors are showing — through their words and actions — that they are reluctant to practice in places where making the best decision for a patient could result in huge fines or even a prison sentence. And when clinics that provide abortions close their doors, all the other services offered there also shut down, including regular exams, breast cancer screenings, and contraception.

The concern about repercussions for women’s health is being raised not just by abortion rights advocates. One recent warning comes from Jerome Adams, who served as surgeon general in the Trump administration.

In a tweet thread in April, Adams wrote that “the tradeoff of a restricted access (and criminalizing doctors) only approach to decreasing abortions could end up being that you actually make pregnancy less safe for everyone, and increase infant and maternal mortality.”

An early indication of that impending medical “brain drain” came in February, when 76% of respondents in a survey of more than 2,000 current and future physicians said they would not even apply to work or train in states with abortion restrictions. “In other words,” wrote the study’s authors in an accompanying article, “many qualified candidates would no longer even consider working or training in more than half of U.S. states.”

Indeed, states with abortion bans saw a larger decline in medical school seniors applying for residency in 2023 compared with states without bans, according to a study from the Association of American Medical Colleges. While applications for OB-GYN residencies were down nationwide, the decrease in states with complete abortion bans was more than twice as large as those with no restrictions (10.5% vs. 5.2%).

That means fewer doctors to perform critical preventive care like Pap smears and screenings for sexually transmitted infections, which can lead to infertility.

Care for pregnant women specifically is at risk, as hospitals in rural areas close maternity wards because they can’t find enough professionals to staff them — a problem that predated the abortion ruling but has only gotten worse since.

In March, Bonner General Health, the only hospital in Sandpoint, Idaho, announced it would discontinue its labor and delivery services, in part because of “Idaho’s legal and political climate” that includes state legislators continuing to “introduce and pass bills that criminalize physicians for medical care nationally recognized as the standard of care.”

Heart-wrenching reporting from around the country shows that abortion bans are also imperiling the health of some patients who experience miscarriage and other nonviable pregnancies. Earlier this year, a pregnant woman with a nonviable fetus in Oklahoma was told to wait in the parking lot until she got sicker after being informed that doctors “can’t touch you unless you are crashing in front of us.”

A study by researchers from the State University of New York-Buffalo published in the Women’s Health Issues journal found that doctors practicing in states with restrictive abortion policies are less likely than those in states with supportive abortion policies to have been trained to perform the same early abortion procedures that are used for women experiencing miscarriages early in pregnancy.

But it’s more than a lack of doctors that could complicate pregnancies and births. States with the toughest abortion restrictions are also the least likely to offer support services for low-income mothers and babies. Even before the overturn of Roe, a report from the Commonwealth Fund, a nonpartisan research group, found that maternal death rates in states with abortion restrictions or bans were 62% higher than in states where abortion was more readily available.

Women who know their pregnancies could become high-risk are thinking twice about getting or being pregnant in states with abortion restrictions. Carmen Broesder, an Idaho woman who chronicled her difficulties getting care for a miscarriage in a series of viral videos on TikTok, told ABC News she does not plan to try to get pregnant again.

“Why would I want to go through my daughter almost losing her mom again to have another child?” she said. “That seems selfish and wrong.”

The anti-abortion movement once appeared more sensitive to arguments that its policies neglect the needs of women and children, a charge made most famously by former Rep. Barney Frank (D-Mass.), who once said: “Conservatives believe that from the standpoint of the federal government, life begins at conception and ends at birth.”

In fact, an icon of the anti-abortion movement — Rep. Henry Hyde (R-Ill.), who died in 2007 — made a point of partnering with liberal Rep. Henry Waxman (D-Calif.) on legislation to expand Medicaid coverage and provide more benefits to address infant mortality in the late 1980s.

Few anti-abortion groups are following that example by pushing policies to make it easier for people to get pregnant, give birth, and raise children. Most of those efforts are flying under the radar.

This year, Americans United for Life and Democrats for Life of America put out a joint position paper urging policymakers to “make birth free.” Among their suggestions are automatic insurance coverage, without deductibles or copays, for pregnancy and childbirth; eliminating payment incentives for cesarean sections and in-hospital deliveries; and a “monthly maternal stipend” for the first two years of a child’s life.

“Making birth free to American mothers can and should be a national unifier in a particularly divided time,” says the paper. Such a policy could not only make it easier for women to start families, but it could address the nation’s dismal record on maternal mortality.

In a year when the same Republican lawmakers who are supporting a national abortion ban are even more vehemently pushing for large federal budget cuts, however, a make-birth-free policy seems unlikely to advance very far or very quickly.

That leaves abortion opponents at something of a crossroads: Will they follow Hyde’s example and champion policies that expand and protect access to care? Or will women’s health suffer under the anti-abortion movement’s victory?

HealthBent, a regular feature of KFF Health News, offers insight and analysis of policies and politics from KFF Health News chief Washington correspondent, Julie Rovner, who has covered health care for more than 30 years.

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

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