La encuesta de KFF, que se realizó con casi 6,300 pacientes que han estado recibiendo atención en los últimos tres años, encontró que alrededor del 55% de los adultos de raza negra sienten que deben tener mucho cuidado con su apariencia para ser tratados de manera justa por los médicos y otros proveedores de atención de salud.

Casi la mitad de los pacientes hispanos, los Indio americanos y los nativos de Alaska sienten lo mismo, al igual que aproximadamente 4 de cada 10 pacientes asiáticos.

En comparación, el 29% de los blancos no hispanos encuestados dijeron que se preocupaban por su apariencia antes de las citas.

“En 2023, la noción de que cualquier persona debe prepararse para sufrir discriminación es triste por un lado y enojoso por el otro”, dijo Burgess Harrison, director ejecutivo de la National Minority Health Association, en un correo electrónico . “El estrés que causa, además de cualquier problema de salud involucrado… es una locura”.

La discriminación ha sido durante mucho tiempo una preocupación tanto para los pacientes como para los proveedores de atención médica, en un país en donde las disparidades raciales en los resultados de salud son enormes y particularmente desfavorables para las personas negras.

Un hombre hispano de 30 años de Illinois, que respondió a la encuesta de KFF, dijo a los investigadores que cuando va a sus citas médicas usa ropa con el logo de la universidad en donde trabaja. Se dio cuenta que cuando los proveedores se enteran que es profesor, lo escuchan más atentamente y lo involucran más en las decisiones médicas, dijo.

Una mujer asiática de 44 años de California dijo que sus médicos varones, blancos no hispanos, ignoraron sus preocupaciones sobre sus problemas respiratorios y le dijeron que “probablemente estaba pensando demasiado en respirar”. Más tarde le diagnosticaron asma.

Los dos encuestados no fueron identificados con nombre y apellido en el estudio.

La encuesta ofrece “una manera de cuantificar realmente cuáles son esas experiencias con el racismo y la discriminación, y las múltiples formas en las que luego impactan en la vida de las personas”, dijo Samantha Artiga, directora del programa de políticas de salud y equidad racial de KFF.

“Para las personas que han estado siguiendo estos temas durante mucho tiempo, los hallazgos no son inesperados”, agregó. Otros hallazgos del sondeo fueron:

• Un tercio de los adultos informaron al menos una de varias experiencias negativas con un proveedor de atención médica en los últimos tres años, como que un profesional asumiera algo sobre ellos sin preguntar, o sugiriera que ellos eran los responsables de su problema de salud.
• Casi una cuarta parte de los adultos negros, el 19% de los adultos nativos de Alaska y nativos americanos, el 15% de los adultos hispanos y el 11% de los adultos asiáticos dijeron que creían que habían sufrido un trato negativo debido a su raza u origen étnico.
• El 22% de las embarazadas o que dieron a luz en los últimos 10 años, de raza negra, dijeron que les negaron los analgésicos que pensaban necesitaban. Sólo el 10% de los adultos blancos no hispanos en circunstancias similares informaron la misma queja.

Cuando las personas no se sienten respetadas o bienvenidas por sus proveedores de salud, es posible que eso los desanime a buscar ayuda médica o que cambien de proveedor con más frecuencia, dijo Artiga. Los pacientes de poblaciones minoritarias “experimentan peor salud como resultado de un trato injusto en el sistema de atención médica”, agregó.

La encuesta también encontró que la discriminación fuera del sistema de atención médica tenía consecuencias para la salud. Las personas que dijeron haber experimentado discriminación en su vida cotidiana informaron dos veces más seguido que a menudo se sentían ansiosas, solas o deprimidas en comparación con aquellas que rara vez o nunca habían enfrentado discriminación.

La encuesta encontró que las personas negras que reportaron tonos de piel más oscuros tenían más probabilidades de haber sufrido discriminación que aquellos con piel más clara. También reveló “cómo persisten y prevalecen las experiencias de racismo y discriminación hoy en día, en la vida diaria y también en la atención médica, a pesar del aumento de las alertas y el abordaje sobre el racismo”, dijo Liz Hamel, directora de investigación de encuestas y opinión pública de KFF.

La diversidad entre los proveedores de atención médica es importante, según la encuesta. La mayoría de las personas de minorías que participaron en la encuesta dijeron que menos de la mitad de sus visitas médicas en los últimos tres años fueron con un proveedor de su misma raza u origen étnico. Los que sí vieron a un médico de su misma raza o etnia tuvieron más probabilidades de informar mejores experiencias, como que su médico les explicara las cosas “de una manera que pudieran entender” o les preguntara sobre otros factores de salud como su empleo, vivienda y acceso a alimentos y transporte.

El 40% de los adultos negros que vieron a proveedores de su mi raza reportaron haber discutido temas sociales y económicos, mientras que solo el 24% dijo haber charlado sobre estos temas con proveedores de otras razas.

​Harrison, de la National Minority Health Association, escribió que “es vital un énfasis renovado en reclutar más personas de color en el campo de la atención médica”.

Agregó que la encuesta “ilustra dolorosamente que el prejuicio racial en la atención sanitaria es tan dañino como cualquier enfermedad”.

La “Encuesta sobre racismo, discriminación y salud” de KFF se realizó del 6 de junio al 14 de agosto en línea y por teléfono entre una muestra representativa a nivel nacional de adultos estadounidenses en inglés, español, chino, coreano y vietnamita.

Esta historia fue producida por KFF Health News, conocido antes como Kaiser Health News (KHN), una redacción nacional que produce periodismo en profundidad sobre temas de salud y es uno de los principales programas operativos de KFF, la fuente independiente de investigación de políticas de salud, encuestas y periodismo. 

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 KFF survey of nearly 6,300 patients who have had care in the past three years found that about 55% of Black adults feel they have to be very careful about their appearance to be treated fairly by doctors and other health providers. Nearly half of American Indian, Alaska Native, and Hispanic patients feel similarly, as do about 4 in 10 Asian patients.

By comparison, 29% of white people surveyed said they worried about their appearance before appointments.

“In 2023, the notion that any person must prepare for discrimination is sad on one hand and angering on the other,” Burgess Harrison, executive director of the National Minority Health Association, wrote in an email. “The stress that this causes, in addition to whatever health issue involved, is crazy.”

Discrimination has long been a concern for both patients and health providers in the U.S., where racial disparities in health outcomes are vast and particularly unfavorable toward Black people.

A 30-year-old Hispanic man in Illinois who responded to the KFF survey told researchers he wears clothes to health care appointments with the logo of the university where he works. He noticed, he said, that when health care providers know he is a professor, they listen to him more intently and involve him more in care decisions.

A 44-year-old Asian woman in California told the researchers that her white male doctors ignored her concerns about breathing issues, telling her she “was probably just thinking too hard about breathing.” She was later diagnosed with asthma.

The two respondents were not identified in the study.

The survey offers “a way to actually quantify what those experiences are with racism and discrimination, and the multitude of ways they then impact people’s lives,” said Samantha Artiga, director of KFF’s racial equity and health policy program.

“For folks who have been following these issues for a long time, the findings are not unexpected,” she said.

Other findings:

• A third of adults reported at least one of several negative experiences with a health care provider in the past three years, such as a professional assuming something about them without asking, or suggesting they were to blame for a health problem.
• Nearly a quarter of Black adults, 19% of Alaska Native and Native American adults, 15% of Hispanic adults, and 11% of Asian adults said they believed they endured negative treatment because of their race or ethnicity.
• Twenty-two percent of Black adults who were pregnant or gave birth in the past 10 years said they were denied pain medication they thought they needed. Just 10% of white adults in similar circumstances reported the same complaint.

When people don’t feel respected or welcomed by their health care providers, they may be discouraged to reach out for medical help or may switch providers more often, Artiga said. Members of minority populations are found to be “experiencing worse health as a result of experiencing unfair treatment in the health care system,” she said.

The survey also found that discrimination outside the health care system had health consequences. People who said they experienced discrimination in their everyday lives were more than twice as likely to report often feeling anxious, lonely, or depressed compared with those who rarely or never faced discrimination.

Black people who self-reported darker skin tones were more likely to have encountered discrimination than those with lighter skin, the survey found.

The survey reveals “how persistent and prevalent experiences with racism and discrimination remain today, in daily life and also in health care, despite, really, the increased calls and focus on addressing racism,” said Liz Hamel, KFF’s director of public opinion and survey research.

Diversity among health care providers matters, the survey found. Most people of color who participated in the survey said that fewer than half of their medical visits in the past three years were with a provider who shared their race or ethnicity. But Black patients who had at least half their visits with a provider of their race or ethnicity, for example, were more likely to report better experiences, such as their doctor explaining things “in a way they could understand” or asking them about health factors such as their employment, housing, and access to food and transportation.

Nearly 40% of Black adults whose health providers were also Black said they discussed such economic and social subjects, while just 24% of Black adults who saw providers who weren’t Black said those issues were brought up.

Harrison, of the National Minority Health Association, wrote that “a renewed emphasis on recruiting more people of color into the health care field is vital.”

The survey, he added, “painfully illustrates that racial bias in healthcare is as damaging as any disease.”

KFF’s “Survey on Racism, Discrimination and Health” was conducted from June 6 to Aug. 14 online and by telephone among a nationally representative sample of U.S. adults in English, Spanish, Chinese, Korean, and Vietnamese.

This article was produced by KFF Health News, formerly known as Kaiser Health News (KHN), a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

After introducing the nominee, Monica Bertagnolli, at a hearing of the Health, Education, Labor and Pensions Committee, Sanders quickly pivoted to the high prices Americans pay for prescription drugs.

“Let me say a few words about my concerns,” he said, using his opening statement to detail the failures of the country’s “broken” health system. “Very relevant to the hearing that we are conducting right now,” he said, “we spend, as a nation, the highest prices — we pay the highest prices in the world for prescription drugs, in some cases 10 times more than the people in other nations.”

The way the hearing began — introducing issues and politics that are not necessarily on point — highlights how much the job of leading the NIH has changed. The agency has a budget of more than $47 billion, making it the largest funder of medical research in the world. But the responsibility of its director has, since the pandemic, taken on new layers of complexity.

It has become “an enormous job of bridging between the world of policy, the world of the public, and the world of science,” said Larry Levitt, executive vice president for health policy at KFF.

“Covid turned the scientific health agencies into political footballs like never before,” he said in an interview.

The nomination of Bertagnolli, a surgical oncologist and the director of the NIH’s National Cancer Institute, was applauded by much of the medical research community, especially the oncology world. But after she was tapped for the role in May, progress stalled.

The confirmation of Bertagnolli’s predecessor, Francis Collins, a physician and geneticist, took just four weeks in 2009, Sen. Tommy Tuberville (R-Ala.), observed. Bertagnolli’s, he told her, has “faced a much different nomination process. Your nomination was held up by Chairman Sanders.”

Sanders agreed to hold the hearing only after the Biden administration announced a contract with biotech company Regeneron Pharmaceuticals for a next-generation monoclonal antibody to prevent covid-19 that required the list price of any resulting drug to be equal to or lower than the price in other major countries.

During the hearing, he returned to the issue, suggesting NIH should seek more such agreements with drugmakers that depend on the agency’s research. He asked Bertagnolli if she could “commit to us that you will work to make sure that Americans do not pay higher prices for prescription drugs in this country than people around the world.”

She responded noncommittally. “It would be a great honor to be able to work with you to make sure that the American people have access to the care that they need to live long and healthy lives.”

As part of his criticism of Sanders, Tuberville also pointed out that the NIH has been without a confirmed director for 21 months. Tuberville, meanwhile, has for months been holding up nominations to military leadership positions over abortion policies.

If she’s confirmed, Bertagnolli would lead the NIH at a time of high scrutiny and skepticism of public health agencies. HELP Committee Ranking Member Bill Cassidy (R-La.) told her that part of her duty would be “to rebuild the relationship with Congress and the public, being a leader that represents the interests of all Americans and not just of the scientific community.”

To this end, senators asked Bertagnolli about how she would lead the agency’s research on maternal health and diabetes, and about how she would address both opioid addiction and mental health crises. She was pressed on how accessible NIH’s data would be to the public.

Roger Marshall (R-Kan.) asked if she thought taxpayers should “fund gender reassignment experiments.” She dodged the question, noting that transgender youth are some of the most vulnerable in the country.

Bertagnolli kept a cool tone throughout the hearing as she shared her vision of “making sure that American people have access and availability and can afford the health care that can save lives.”

Senators also questioned how well-rounded Bertagnolli’s experience is and whether she would favor the NCI over the agency’s 26 other institutes and centers. Sen. Susan Collins (R-Maine) asked Bertagnolli if she would be able to find a balance.

She explained that, as an oncologist, she “took care of patients of all ages, all walks of life, all different health states. I am very familiar to working with colleagues in cardiology, in mental health, in opioid use disorder, in kidney disease, to take care of my patients with cancer.”

The HELP Committee has scheduled a vote on Bertagnolli’s nomination Oct. 25.

This article was produced by KFF Health News, formerly known as Kaiser Health News (KHN), a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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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Then it got busy.

A student fell from the monkey bars and another tripped while playing tag. Two kids hit each other’s heads with lunchboxes and needed ice packs. A young boy had a stomachache. Bobbitt also saw her regular kiddos: one who has special needs and uses a wheelchair and another who has diabetes and gets his blood sugar checked daily before lunch.

“Every day, I’m seeing more and more [youngsters],” Bobbitt, who is a certified nurse practitioner, said with a smile. “I saw more today than yesterday, so we just have to wait and see what the year has in store.”

As the only school nurse at this suburban Washington, D.C., elementary school, Bobbitt’s responsibilities extend beyond treating scraped knees and sniffles for the school’s 600 pupils. At her under-the-sea-themed clinic, she administers medications, teaches kids about health care, and conducts routine health screenings. As the school nurse, she also serves as a public health point person — tracking student vaccinations, linking parents to local health care resources, and communicating sometimes difficult messages to them, such as warnings about sexually transmitted diseases and signs of depression.

It’s a full plate, but Bobbitt considers herself lucky. In a previous school nursing job, she split her time between two buildings within the same school district — some years three. What hasn’t changed is that school nurses play a critical role in keeping students healthy and ready to learn, but it’s an often-unrecognized field for which schools struggle to attract and retain employees.

More than a third of schools nationwide don’t have a full-time nurse on-site, according to a 2021 survey by the National Association of School Nurses. The schools that don’t have a dedicated nurse either share one with other campuses, or don’t have one at all. Meanwhile, the nation is facing high rates of chronic illnesses among K-12 students, such as diabetes and asthma, along with an unprecedented mental health crisis among youth, and school nurses are at the front lines — often, alone.

School nurses’ roles were further complicated by covid-19. Since the pandemic took hold, they’ve been tasked with tracking cases and tracing exposures. An “extreme load of work was put on school nurses’ shoulders during the pandemic,” said Kate King, president of the NASN.

They got caught in the middle between anti-maskers and maskers and anti-vaccine and pro-vaccine parents, and were the point of contact whenever students had to quarantine. “School nurses are used to interacting with parents who are angry,” said King, but because of the pandemic “that anger just got to levels we had never seen before.”

In general, kids’ attendance and learning can suffer when students don’t have access to a school nurse. “You’re going to see more absences,” she said, citing a study from the Journal of School Nursing that found students with illnesses or injuries were sent home 18% of the time when evaluated by an unlicensed school employee while only 5% went home after being seen by a school nurse.

Teachers and administrators are shouldering some of the burden by learning how to handle injuries and illnesses themselves, but “it doesn’t take the place of having a school nurse who can respond immediately,” King said.

Though there is no federal law requiring schools to have nurses on staff, the Centers for Disease Control and Prevention recommends at least one full-time nurse for every 750 students enrolled — but most states are missing the mark by miles. School nurses in California have one of the heaviest workloads in the country with a student-to-school-nurse ratio of 2,410 students for every nurse, according to the Public Policy Institute of California.

According to research organization Child Trends, California, along with 34 other states and the District of Columbia, requires schools to employ school nurses. Of those, 12 set required nurse-to-student ratios. Seven states encourage schools to have nurses on staff. Eight states don’t have mandates on the books.

Still, schools were scrambling over the summer to hire nurses.

Jessica Sawko, director of education for Children Now, a California-based nonprofit organization, said schools struggle not only to retain nurses but also encourage aspiring nurses to consider working in schools. Districts can’t compete with the salaries and benefits hospitals offer. The national median salary for school nurses is nearly $55,000 a year, but a registered nurse could make nearly $30,000 more annually working at a hospital.

In some states, school nurses need special certification in addition to their nursing degrees.

The lack of school nurses is a byproduct of a larger issue: the nation’s overall nursing shortage. Health organizations in general — even those that offer healthy salaries — are facing difficulties hiring and keeping nurses. Around 40% of nurses who participated in a 2023 survey by McKinsey & Co. said they were considering leaving their position.

As a nurse for junior high students, King said she is keenly aware that school nurses sometimes serve as students’ only contact with a health care professional, especially at her campus.

World Language Middle School in Columbus, Ohio, where King works, has a diverse student body and takes in many students who are new to the country. “So that requires school nurses like myself to have a very broad range of knowledge of diseases and symptoms,” she said.

Robin Wallin, director of school health services for Alexandria City Public Schools, said that another layer of this issue is that school nursing “is an aging cohort.” The district has at least one school nurse in each of its 18 campuses — but this year it was a challenge to fill every spot. That’s partly because many school nurses are aging out, starting to retire, she said. “We need to start to replenish our cohorts.”

Bobbitt said the nursing students who shadow her almost never imagine themselves working in a school. “They want to work in the ER, they want to work in the hospital, they want to work in the NICU, or somewhere where they can have that adrenaline,” Bobbitt said. “This is a little different,” she said, adding that it is fast paced in its own way.

Robin Cogan is a clinical coordinator at Rutgers University’s School Nurse Specialty Program in New Jersey, and she said one of the biggest learning curves for nurses who opt to work in school settings is that they are “often an independent practitioner,” which involves juggling a lot of responsibilities.

Meanwhile, Bobbitt, working in her brightly colored clinic, stays focused on her daily mission: to address the students’ needs as quickly as possible. “We don’t want them to miss very much school or much class work,” Bobbit said. “That’s our goal, right?”

This article was produced by KFF Health News, formerly known as Kaiser Health News (KHN), a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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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Hanke remembers the night 13 years ago when Charlie, then 3 weeks old, was fussier than usual, so he picked him up to soothe him back to sleep. With Charlie still in his arms, he sat on the couch, turned on the TV, and nodded off.

“We were kind of chest to chest, the way you see in pictures a lot,” Hanke said. But he didn’t realize Charlie’s airways were blocked. Too young to turn his head, too squished to let out a cry, Charlie died silently. The next morning, Hanke woke up to his worst nightmare. Years of medical school weren’t enough to prevent Hanke from losing Charlie to accidental suffocation.

Sudden infant death syndrome, a well-known term that describes unexplained but natural infant deaths resulting from an unknown medical abnormality or vulnerability, is the leading cause of unexpected deaths among infants in the U.S. It has long been among new parents’ greatest fears.

Rates for SIDS have declined since the 1990s, but a different cause of infant death — accidental suffocation or strangulation — has also been a persistent problem. That national rate for the past decade has hovered between 20 and 25 infant deaths per 100,000 live births, accounting for around a fifth of all unexpected infant deaths, according to the Centers for Disease Control and Prevention. Accidental suffocations and strangulations aren’t necessarily happening more often, some experts say; rather, fatality review teams have become better at identifying causes of death.

And the trend remains steady despite decades of public information campaigns imploring parents to take steps to keep their babies safe while sleeping.

In the mid-1990s, the National Institute of Child Health and Human Development launched its “Back to Sleep” campaign, to teach parents to lay infants on their backs to sleep. “There were tremendous results after ‘Back to Sleep,’” said Alison Jacobson, executive director of First Candle, a Connecticut-based nonprofit group focused on safe sleep education. Unexpected infant deaths dipped about 40% from 1990 levels, which was before that campaign launched, according to the CDC. “But then it plateaued,” Jacobson said.

The NICHD eventually broadened this message with other ways to limit risks beyond a baby’s sleep position with the “Safe to Sleep” initiative.

Some clear warnings from it: Infants shouldn’t sleep with blankets, stuffed toys, or bumpers that “can potentially lead to suffocation or strangulation,” said Samantha St. John, program coordinator for Cook Children’s Health Care System in Fort Worth, Texas. They also should sleep in cribs or bassinets — not on beds with siblings or in parents’ arms.

But these public health messages — contradicted by photos or videos circulating in movies and social media — don’t always find traction. Professional photos of infants, for example, too commonly show them peacefully snoozing surrounded by plush animals and blankets. St. John added that parents sometimes have preconceived ideas of how infants’ sleeping spaces should be decorated. “When you think of cribs and nurseries and things like that, you imagine the pictures in the magazines,” St. John said. “And those are beautiful pictures, but it doesn’t keep your baby safe.”

St. John said many parents know that babies should be on their backs to sleep, but warnings about strangulation by blankets or suffocation by sharing a bed with them sometimes fall through the cracks.

For instance, new parents, especially single parents, are more likely to accidentally fall asleep with their infants because of exhaustion, said Emily Miller, a neonatologist at Cincinnati Children’s Hospital.

The idea that sleeping with one’s baby is dangerous can also be counterintuitive to a new parent’s instinct. “We feel like being close to them, being able to see them, being able to touch them and feel that they’re breathing is the best way we can protect them and keep them safe,” said Miller, who is also an assistant professor at the University of Cincinnati’s Department of Pediatrics.

Organizations across the country are working to help parents better understand the true risks. Hanke and his wife, for instance, channeled their grief into Charlie’s Kids, a nonprofit focused on safe sleep practices for infants. The Hankes also wrote a book, “Sleep Baby, Safe and Snug,” which has sold about 5 million copies. The proceeds are used to continue their educational efforts.

Ohio, where Charlie’s Kids is based, in 2020 saw 146 sudden unexpected infant deaths, a classification that includes SIDS, accidental suffocation and strangulation, and other instances in which the cause is undetermined. That’s about a death for every 1,000 live births, according to the state’s health department. Thirty-six percent of those deaths were attributed to accidental suffocation or strangulation. Nationally, the rate of these unexplained deaths has declined since the 1990s, but, according to the CDC, significant racial and ethnic differences continue.

The particular risks for an infant’s accidental suffocation in many respects are situational — and often involve people at the lower end of the income scale who tend to live in close quarters. People who live in a small apartment or motel often share sleep space, said St. John.

Tarrant County has one of Texas’ highest rates of infant deaths — three to four each month — attributed to accidental suffocation.

So, organizations like the Alliance for Children in Tarrant County, which serves Fort Worth and parts of Dallas, have been providing free bassinets and cribs to those in need.

County representatives spoke during the state’s Child Fatality Review Team meeting in May and focused on the prevalence of infant deaths linked to accidental suffocation. For the past decade, data shows, the county has averaged 1.05 sudden unexpected infant deaths per 1,000 births, which is higher than both the state and national averages of 0.85 and 0.93, respectively. During a 15-month period starting in 2022, Cook Children’s Medical Center saw 30 infants born at the hospital die after they left because of unsafe sleeping environments.

Sometimes parents’ decisions are based on fears that stem from their environments. “Parents will say ‘I’m bringing my baby into bed because I’m afraid of gunshots coming through the window, and this is how I keep my baby safe’ or ‘I’m afraid rats are going to crawl into the crib,’” said First Candle’s Jacobson.

She understands these fears but stresses the broader context of safe sleep.

The key to educating parents is to begin when they are still expecting because they receive “a load of information” in the first 24 or 48 hours after a baby is delivered, said Sanjuanita Garza-Cox, a neonatal-perinatal specialist at Methodist Children’s Hospital in San Antonio. Garza-Cox is also a member of the Bexar County Child Fatality Review Team.

And once a child is born, the messaging should continue. In Connecticut, for instance, First Candle hosts monthly conversations in neighborhoods that bring together new parents with doulas, lactation consultants, and other caregivers to discuss safe sleep and breastfeeding.

And both Tarrant and Bexar counties are placing ads on buses and at bus stops to reach at-risk parents and other caregivers such as children, relatives, and friends. Parents are very busy, Garza-Cox said. “And sometimes, multiple children and young kids are the ones watching the baby.”

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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Hanke recuerda la noche de hace 13 años en la que Charlie, que entonces tenía 3 semanas, estaba más inquieto de lo normal, así que lo tomó en brazos para calmarlo y que volviera a dormirse. Con Charlie aún en brazos, se sentó en el sofá, encendió la tele y se quedó dormido.

“Estábamos pecho con pecho, como se ve a menudo en las fotos”, dijo Hanke. Pero no se dio cuenta de que Charlie tenía las vías respiratorias obstruidas. Demasiado pequeño para girar la cabeza y demasiado apretado para llorar, Charlie murió en silencio. A la mañana siguiente, Hanke despertó a la peor de las pesadillas. Los años de estudios de medicina no bastaron para evitar que Hanke perdiera a Charlie por asfixia accidental.

El síndrome de muerte súbita del lactante (SMSL), un término muy conocido que describe las muertes inexplicables, pero naturales, de lactantes debidas a una anomalía o vulnerabilidad médica desconocida, es la principal causa de muerte inesperada de lactantes en Estados Unidos. Durante mucho tiempo ha sido uno de los mayores temores de los padres primerizos.

Las tasas de SMSL han disminuido desde la década de 1990, pero otra causa de muerte infantil —la asfixia o estrangulamiento accidental— también ha sido un problema persistente. En la última década, la tasa nacional ha oscilado entre 20 y 25 muertes infantiles por cada 100,000 nacidos vivos, lo que supone alrededor de una quinta parte de todas las muertes infantiles inesperadas, según los Centros para el Control y Prevención de Enfermedades (CDC). Según expertos, las asfixias y estrangulaciones accidentales no son necesariamente más frecuentes, sino que los equipos de revisión de muertes han mejorado en la identificación de las causas.

Y la tendencia se mantiene a pesar de décadas de campañas de información pública pidiéndoles a los padres que tomen medidas para mantener seguros a sus bebés mientras duermen.

A mediados de los 90, el Instituto Nacional de Salud Infantil y Desarrollo Humano (NICHD) lanzó la campaña “Back to Sleep”, para enseñar a los padres a acostar a los bebés boca arriba para dormir.

“Los resultados de ‘Back to Sleep’ fueron tremendos”, afirmó Alison Jacobson, directora ejecutiva de First Candle, una organización sin fines de lucro de Connecticut dedicada a la educación sobre el sueño seguro. Según los CDC, las muertes inesperadas de lactantes se redujeron en un 40% respecto a los niveles de 1990, antes del lanzamiento de la campaña. “Pero luego se estancó”, añadió Jacobson.

Con el tiempo, el NICHD amplió este mensaje con otras formas de limitar los riesgos más allá de la posición en la que duerme el bebé, con la iniciativa “Safe to Sleep” (Seguro al Dormir).

Algunas advertencias claras: los bebés no deben dormir con mantas, peluches o protectores que “puedan provocar asfixia o estrangulamiento”, dijo Samantha St. John, coordinadora del programa del Sistema de Atención Médica Infantil Cook en Fort Worth, Texas. También deben dormir en cunas o moisés, no en camas con hermanos o en brazos de los padres.

Pero estos mensajes de salud pública —a los que contradicen las fotos y los videos que circulan en películas y redes sociales— no siempre encuentran eco. Por ejemplo, las fotos profesionales de bebés suelen mostrarlos durmiendo plácidamente rodeados de peluches y mantas. St. John agrega que a veces los padres tienen ideas preconcebidas de cómo deben decorarse los espacios para dormir de los bebés. “Cuando uno piensa en cunas, cuartos infantiles y cosas así, se imagina las fotos de las revistas”, explicó St. John. “Y son fotos preciosas, pero no mantienen seguro a tu bebé”.

St. John señaló que muchos padres saben que los bebés deben estar boca arriba para dormir, pero las advertencias sobre el estrangulamiento con mantas, o la asfixia por compartir la cama con ellos a veces se pasan por alto.

Por ejemplo, los padres primerizos, sobre todo los solteros, son más propensos a dormirse accidentalmente con sus bebés por agotamiento, dijo Emily Miller, neonatóloga del Hospital Infantil de Cincinnati.

La idea de que dormir con el bebé es peligroso también puede ser contraria al instinto de los padres primerizos. “Creemos que estar cerca de ellos, poder verlos, poder tocarlos y sentir que respiran es la mejor forma de protegerlos y mantenerlos a salvo”, afirmó Miller, que también es profesora en el Departamento de Pediatría de la Universidad de Cincinnati.

Organizaciones de todo el país trabajan para ayudar a los padres a comprender mejor los verdaderos riesgos. Hanke y su esposa canalizaron su dolor en Charlie’s Kids, una organización sin fines de lucro centrada en las prácticas de sueño seguras para los bebés. Los Hanke también escribieron un libro, “Sleep Baby, Safe and Snug”, del que se han vendido unos 5 millones de ejemplares. Los beneficios se destinan a continuar su labor educativa.

En Ohio, donde tiene su sede Charlie’s Kids, se produjeron en 2020 146 muertes súbitas e inesperadas de lactantes, una clasificación que incluye SMSL, asfixia y estrangulamiento accidentales, y otros casos cuya causa es indeterminada. Eso es aproximadamente una muerte por cada 1,000 nacidos vivos, según el Departamento de Salud del estado. El 36% de esas muertes se atribuyeron a asfixia o estrangulamiento accidentales. A nivel nacional, la tasa de estas muertes inexplicables ha bajado desde la década de 1990, pero, según los CDC, persisten importantes diferencias raciales y étnicas.

Los riesgos de asfixia accidental de un bebé son, en muchos aspectos, situacionales, y a menudo afectan a las personas que se encuentran en el extremo inferior de la escala de ingresos y tienden a vivir en espacios reducidos. Las personas que viven en un apartamento pequeño o en un motel suelen compartir espacio para dormir, explicó St John.

El condado de Tarrant tiene una de las tasas más altas de Texas de muertes infantiles —de tres a cuatro cada mes— atribuidas a la asfixia accidental.

Por ello, organizaciones como Alliance for Children del condado de Tarrant, que atiende a Fort Worth y partes de Dallas, han estado proporcionando gratis moisés y cunas a quienes los necesitan.

Los representantes del condado hablaron durante la reunión del Equipo de Revisión de Muertes Infantiles del estado, en mayo, y se centraron en la prevalencia de muertes infantiles relacionadas con la asfixia accidental. Durante la última década, los datos muestran que el condado ha promediado 1,05 muertes súbitas inesperadas de lactantes por cada 1,000 nacimientos, cifra superior a las medias estatal y nacional de 0,85 y 0,93, respectivamente.

Durante un período de 15 meses desde 2022, Cook Children’s Medical Center registró 30 bebés que nacieron allí y que murieron después de salir del hospital, debido a entornos inseguros para dormir.

A veces, las decisiones de los padres se basan en temores que provienen de sus entornos. “Los padres dirán: ‘Llevo a mi bebé a la cama porque tengo miedo de que entren disparos por la ventana, y así es como mantengo seguro a mi bebé’ o ‘Tengo miedo de que las ratas se metan en la cuna'”, dijo Jacobson, de First Candle.

Jacobson comprende estos temores, pero insiste en la necesidad real del sueño seguro.

La clave para educar a los padres es empezar cuando aún están esperando un bebé, porque reciben “demasiada información” en las primeras 24 o 48 horas tras el parto, explicó Sanjuanita Garza-Cox, especialista en neonatología y perinatalidad del Methodist Children’s Hospital de San Antonio. Garza-Cox también es miembro del Equipo de Revisión de Muertes Infantiles del condado de Bexar.

Y una vez nacida la criatura, el mensaje debe continuar. En Connecticut, por ejemplo, First Candle organiza conversaciones mensuales en vecindarios que reúnen a padres primerizos con doulas, asesores de lactancia y otros cuidadores para hablar del sueño seguro y la lactancia materna.

Y tanto el condado de Tarrant como el de Bexar han desplegado anuncios en buses y paradas de autobús para llegar a los padres en situación de riesgo y a otros cuidadores, como hijos, familiares y amigos. Los padres están muy ocupados, dijo Garza-Cox. “Y a veces, otros niños y niñas son los que cuidan al bebé”.

Esta historia fue producida por KFF Health News, conocido antes como Kaiser Health News (KHN), una redacción nacional que produce periodismo en profundidad sobre temas de salud y es uno de los principales programas operativos de KFF, la fuente independiente de investigación de políticas de salud, encuestas y periodismo. 

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 Republican governor signed House Bill 2127 — known as the Texas Regulatory Consistency Act but dubbed the “Death Star” by critics — the same month the state saw at least 13 heat-related deaths amid a scorching heat wave that’s on track to break records.

The measure, heavily backed by business and building sectors, was designed to replace “the regulatory patchwork” of county and municipal rules across the state “with a single set of predictable, consistent regulations,” according to a fact sheet circulated by its supporters. That means cities would no longer have the authority to enforce local ordinances related to agriculture, natural resources, finance, and labor; and local protections against extreme heat, such as water break requirements, would be rolled back.

The group of about three dozen people stood in the early-afternoon sun and held signs that read “Working Shouldn’t Be a Death Sentence,” “Water Breaks = Basic Right,” and “People Over Profits,” sweating and squinting. In the nation’s capital, the heat index had already reached 91 degrees. But protesters were focused on the plight of employees working in their even-hotter home state, where the thermostat had been reaching triple digits.

Rep. Greg Casar (D-Texas), who organized this week’s protest, joined more than 100 other U.S. legislators in signing a letter urging acting Labor Secretary Julie Su to continue the development and implementation of federal standards for rest and water breaks to prevent occupational heat illness and death.

Casar, along with others in the group, including members of San Juan, Texas-based La Unión del Pueblo Entero and civil rights activist Dolores Huerta, didn’t eat or drink from 10:30 a.m. to 6:30 p.m., both to push for national action to reverse Abbott’s law and as a sign of solidarity with Texas employees, especially those who work outside.

“A basic thing like the right to a water break, a basic thing like being able to go to work and know that working is not a death sentence, is the baseline of what our democracy should be able to do,” Casar said, with sweat dripping from his forehead.

Huerta, 93, who worked alongside the legendary labor activist Cesar Chávez to create organizations like La Unión, reminded the crowd that in the 1960s farmworkers in California went on strike to protest poor and dangerous working conditions, including the lack of job security, bathroom access, and water during the day.

“This is such a cruel thing,” Huerta said.

A steady stream of lawmakers came by to express support for the rally, including House Minority Leader Rep. Hakeem Jeffries of New York and well-known progressives like Sen. Bernie Sanders (I-Vt.), Rep. Alexandria Ocasio-Cortez (D-N.Y.), and other members of “The Squad,” a small group of liberal House Democrats. And from California, another state in the midst of a heat wave, Democratic Reps. Katie Porter, who is running for the Senate, and Ro Khanna also made appearances. California is among those states that have rules in place to protect workers from extreme heat.

Rep. Joaquin Castro (D-Texas) was in attendance and challenged Abbott to spend a day without water. “One day in the governor’s mansion, the air-conditioned governor’s mansion, without water,” he said. “Or better yet, one day with the folks who are out in the fields, the folks who are out on top of roofs, the folks who are at construction sites.”

At the front of the crowd were Jasmine and Daisy Granillo, younger sisters of Roendy Granillo, a construction worker of Fort Worth, Texas, who died in July 2015 from heat exhaustion. He was 25 and was installing hardwood flooring in a house without ventilation. The temperature was in the high 90s, he was wearing extra layers of protection because of the chemicals in the wood, and his request for a water break was denied. “My parents were told that his organs were cooked from the inside,” Jasmine said.

On the day Roendy passed away, he told his sisters he would take them to the flea market when he came home from work. He didn’t come home. They’re now committed to making sure others don’t suffer from heat exhaustion as he did. “I know that a simple water break, a simple water break, could have prevented his death,” Jasmine told KFF Health News.

This is the second time Jasmine and her family have rallied for water breaks for outdoor workers. After her brother died, she and others pushed the Dallas City Council in 2015 to pass an ordinance establishing 10-minute rest breaks every four hours for construction workers. In 2010, Austin passed its own such rule. Abbott’s law, set to take effect Sept. 1, will dissolve those ordinances and prohibit local governments from passing similar ones.

The protesters gathered at the Capitol steps also said they worried that corporate interests would try to block the national rule from seeing the light of day. “They delay them as long as they can until they die a slow death, and we’re here today to make sure that doesn’t happen,” Casar said.

Taylor Critendon, a registered nurse who specializes in critical care at Ascension Seton Medical Center in Austin, attended the event to monitor the congressman’s vitals and keep an eye on the group’s well-being. She said she has been treating more patients because of heat exhaustion than before. “It’s definitely taking a toll on our community,” she said.

She emphasized that not drinking enough water while outside in hot temperatures can cause someone’s heart rate to rise and blood pressure to drop. Often, patients start to feel weak and faint and lose blood flow, she said, referencing the body’s internal mechanism to cool itself down. People shouldn’t wait to experience these symptoms before drinking water.

“When you’re thirsty, then you’re already farther down the line of dehydration,” Critendon said, explaining why outside workers need regular water breaks. “You can’t really wait until your body says, ‘Oh, I’m thirsty,’ because by that time it’s already late.”

Tania Chavez Camacho, president and executive director of La Unión del Pueblo Entero, also participated in the daylong hunger and thirst strike. The union has historically protected the rights of migrant farmworkers in South Texas but has more recently expanded to include others, such as construction workers.

“We’ve been here for just about an hour,” she said. “We’re sweating” and “it’s really, really hot,” she added. “Can you imagine what it is like for construction workers every single day?”

This article was produced by KFF Health News, formerly known as Kaiser Health News (KHN), a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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 hotline was designed with the idea that people experiencing emotional distress are more comfortable reaching out for help from trained counselors than from police and other first responders through 911.

Since the federally mandated crisis hotline’s new number launched in July 2022, 988 has received about 4 million calls, chats, and texts, according to a KFF report — up 33% from the previous year. (The hotline previously used a 10-digit number, 800-273-8255, which remains active but is not promoted.)

At a July press event, policymakers and mental health experts celebrated the hotline’s first-year successes as well as its additional $1 billion in funding from the Biden administration. Health and Human Services Secretary Xavier Becerra described 988 as a “godsend” during taped remarks. “It may not be the solution,” he said, “but it lets you touch someone who can send you on a path to where you will get the help you need.”

Those same advocates recognized the dark reality represented by 988’s high call volume: The nation faces a mental health crisis, and there is still much work to be done.

One year in, it’s also clear that the 988 hotline, a network of more than 200 state and local call centers, faces challenges ahead, including public mistrust and confusion. It’s also clear the hotline needs federal and state funding intervention to be sustainable.

Here’s a status check on where things stand:

What Worked?

The original 1-800 national mental health crisis hotline has operated since 2005. The huge increase in calls to 988 compared with those to the 1-800 number in just a year is likely linked to the simplicity of the three-digit code, said Adrienne Breidenstine, vice president of policy and communications at Behavioral Health System in Baltimore. “People are remembering it easily,” she told KFF Health News.

According to a survey by NAMI and IPSOS conducted in June, 63% of Americans had heard of 988, and those ages 18 to 29 were most aware. Additionally, the survey found that LGBTQ+ people were twice as likely to be familiar with 988 as people who don’t identify as LGBTQ+.

The 988 hotline provides 24/7 support for people in suicidal crisis or other kinds of emotional distress, Breidenstine said. “They can be calling if they really just had a bad day,” she said. “We also get some calls from people experiencing postpartum depression.” Callers are directed to a menu of options to choose which kind of service would best help them, including a veterans’ line.

As it launched, mental health experts worried about the hotline’s ability to keep up with demand. But it appears to be growing into its position. “Despite a huge increase of demand on the system, it’s been holding up, and it’s been holding up exceptionally well,” Hannah Wesolowski, chief advocacy officer at the National Alliance on Mental Illness, told KFF Health News. It now takes an average of 35 seconds for someone reaching out to 988 — by calling or texting — to reach a counselor, according to data from the Substance Abuse and Mental Health Services Administration. A year ago, that average was one minute and 20 seconds.

Wesolowski said one of the biggest surprises with the launch was the frequency of text-message traffic. In November 2022, the Federal Communications Commission voted to require 988 to be texting-friendly.

In May, according to SAMHSA, 988 received about 71,000 texts nationwide with a 99% response rate, compared with 8,300 texts in May 2022 with an 82% response rate.

This month, HHS announced the addition of Spanish text and chat services to 988.

Challenges Ahead

More than half of Americans have heard of 988, but only a small fraction understand how the hotline operates. According to NAMI’s survey, only 17% of people who responded said they were “very/somewhat familiar” with the hotline.

Most people think that by calling 988, like 911, emergency services will automatically head their way, the survey found. Currently, 988 does not use geolocation, meaning call centers don’t automatically receive information about callers’ locations. Vibrant Emotional Health, which operates the hotline, is working to incorporate geo-routing into the system, which would help identify callers’ regions — but not exact locations — making it possible to connect them to local counseling groups and other mental health services.

But incorporating geo-routing into the hotline isn’t without controversy. When it launched, people responded on social media with warnings that calling 988 brought a heightened risk for police involvement and involuntary treatment at psychiatric hospitals. “Based on the trauma that so many people in the mental health community have long experienced when they’ve been in crisis, those assumptions are very understandable,” Wesolowski said.

Fewer than 2% of calls end up involving law enforcement, she said, and most are de-escalated over the phone.

“The vast majority of people think that an in-person response is going to happen whenever you call — and that’s just simply not true,” Wesolowski said.

Another challenge mental health advocates face is informing older adults about 988, especially veterans, who are at higher risk of having suicidal ideations. Americans ages 50 to 64 had the lowest awareness rate of 988 — at 11% — among all age groups, according to NAMI’s survey.

This is a telling sign of how older generations are less willing to discuss and admit to mental health struggles, Wesolowski said. “Young people are just more willing to be open about that, so I think that breaking down that stigma across all age groups is absolutely vital, and we have a lot of work to do in that space.”

Is 988 Sustainable?

Since the hotline launched, it has been dependent on federal grants and annual appropriations. A gush of funding flowed when 988 launched, “but those annual appropriations are something you have to keep going back for year after year, so the sustainability aspect is a little more fraught,” Wesolowski said.

This is where Congress and state legislatures come in.

Mental health leaders hope to push legislation that allows 988 to be funded the same way 911 is nationwide. The Wireless Communications and Public Safety Act of 1999 mandated 911 to be the country’s universal emergency number, and ever since, users have automatically been charged — an average of about a dollar a month — on their monthly phone bills to fund it. Six states have imposed a similar tax for 988, and two states — Delaware and Oregon — have bills for this tax on their governor’s desks.

It’s under the FCC’s power to levy a nationwide tax, but the federal agency hasn’t done so yet.

This article was produced by KFF Health News, formerly known as Kaiser Health News (KHN), a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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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Esta línea directa fue diseñada con la idea de que las personas que experimentan angustia emocional se sintieran más cómodas buscando ayuda de consejeros capacitados que de la policía y otros servicios de emergencia a través del 911.

Desde que se lanzó el nuevo número en julio de 2022, ha recibido 4 millones de llamadas, según un informe de KFF, lo que representa un aumento del 33% respecto al año anterior. (La línea directa anterior era 800-273-8255, que sigue activa pero no se promociona).

En un evento de prensa en julio, políticos y expertos en salud mental celebraron los éxitos del primer año de la línea directa, así como los $1,000 millones adicionales en financiamiento proporcionados por la administración Biden.

Xavier Becerra, secretario del Departamento de Salud y Servicios Humanos (HHS), describió el 988 como “un regalo del cielo” durante sus comentarios grabados. “Puede que no sea la solución”, dijo, “pero te pone en contacto con alguien que puede guiarte hacia la ayuda que necesitas”.

Esos mismos defensores reconocieron la oscura realidad tras el alto volumen de llamadas al 988: la nación enfrenta una crisis de salud mental y aún queda mucho trabajo por hacer.

Después de un año, también está claro que la línea directa 988, una red de más de 200 centros de llamadas estatales y locales, enfrenta desafíos, incluida la desconfianza y confusión del público. También es evidente que la línea directa necesita intervención financiera federal y estatal para ser sostenible.

La siguiente es una revisión de su situación actual:

¿Qué funcionó?

La línea nacional de crisis de salud mental original, el 1-800, ha estado en funcionamiento desde 2005. El gran aumento de llamadas al 988 en comparación con el 1-800 en solo un año probablemente se debe a la simplicidad del código de tres dígitos, según Adrienne Breidenstine, vicepresidenta de políticas y comunicaciones de Behavioral Health System en Baltimore. “La gente lo está recordando fácilmente”, dijo a KFF Health News.

Según una encuesta realizada en junio por NAMI e IPSOS, el 63% de los estadounidenses habían oído hablar del 988, y los jóvenes de 18 a 29 años eran los más conscientes. Además, la encuesta encontró que las personas LGBTQ+ eran dos veces más propensas a estar familiarizadas con el 988 que las personas que no se identificaban como LGBTQ+.

El 988 ofrece apoyo las 24 horas del día, los 7 días de la semana, para personas en crisis suicidas u otras formas de angustia emocional, explicó Breidenstine. “Pueden llamar si simplemente tuvieron un mal día”, dijo. “También recibimos algunas llamadas de personas que experimentan depresión posparto”. A los que llaman, se los dirige a un menú de opciones para elegir qué tipo de servicio les ayudaría mejor, incluida una línea para veteranos.

Cuando se lanzó, expertos en salud mental se preocupaban por la capacidad de la línea directa para hacer frente a la demanda. Pero parece que se está adaptando. “A pesar de un gran aumento en la demanda del sistema, ha estado funcionando y lo ha hecho de manera excepcional”, dijo a KFF Health News Hannah Wesolowski, directora de promoción de la National Alliance on Mental Illnesses.

Según datos de la Substance Abuse and Mental Health Services Administration, ahora, con el 988, se tarda un promedio de 35 segundos para conectarse con un consejero, ya sea llamando o enviando un mensaje de texto. Hace un año, ese promedio era de un minuto y 20 segundos.

Wesolowski dijo que una de las mayores sorpresas con el lanzamiento fue la frecuencia del tráfico de mensajes de texto. En noviembre de 2022, la Comisión Federal de Comunicaciones votó para que el 988 fuera compatible con mensajes de texto.

En mayo, según SAMHSA, el 988 recibió alrededor de 71,000 mensajes de texto en todo el país con una tasa de respuesta del 99%, en comparación con los 8,300 mensajes de texto en mayo de 2022 con una tasa de respuesta del 82%.

Este mes, HHS anunció la incorporación de servicios de texto y chat en español para el 988.

Desafíos por delante

Más de la mitad de los estadounidenses han oído hablar del 988, pero solo una pequeña fracción entiende cómo funciona la línea directa. Según la encuesta de NAMI, solo el 17% de las personas que respondieron dijeron que estaban “muy/algo familiarizadas” con la línea directa.

La mayoría de las personas piensan que al llamar al 988, al igual que al 911, los servicios de emergencia irán automáticamente a su dirección, según encontró la encuesta. Actualmente, el 988 no utiliza la geolocalización, lo que significa que los centros de llamadas no reciben automáticamente información sobre la ubicación de las personas que llaman.

Vibrant Emotional Health, que opera la línea directa, está trabajando para incorporar la geo-ruta en el sistema, lo que ayudaría a identificar las zonas desde donde se realizan las llamadas, pero no sus ubicaciones exactas, lo que permitiría conectarlos con grupos de asesoramiento locales y otros servicios de salud mental.

Sin embargo, incorporar la geo-ruta en la línea directa no está exento de controversia. Cuando se lanzó, las personas respondieron en las redes sociales advirtiendo que llamar al 988 aumentaba el riesgo de que la policía interviniera, y que se hubiera tratamientos involuntarios en hospitales psiquiátricos. “Basándose en el trauma que tantas personas en la comunidad de salud mental han experimentado durante mucho tiempo cuando han estado en crisis, esas suposiciones son comprensibles”, dijo Wesolowski.

Menos del 2% de las llamadas terminan involucrando a la policía, y la mayoría se resuelven por teléfono.

“La gran mayoría de las personas piensan que habrá una respuesta en persona cada vez que llamen, y eso simplemente no es cierto”, dijo Wesolowski.

Otro desafío al que se enfrentan los defensores de la salud mental es informar a los adultos mayores sobre el 988, especialmente a los veteranos, que tienen un mayor riesgo de tener pensamientos suicidas. Según la encuesta de NAMI, los estadounidenses de entre 50 y 64 años tenían la tasa de conocimiento más baja del 988, con un 11%, entre todos los grupos de edad.

Esto es un indicio revelador de cómo las generaciones mayores son menos propensas a hablar y admitir sus luchas con la salud mental, dijo Wesolowski. “Los jóvenes están más dispuestos a ser abiertos al respecto, así que creo que derribar ese estigma en todos los grupos de edad es absolutamente vital, y tenemos mucho trabajo por hacer en ese sentido”.

El 988, ¿es sostenible?

Desde su lanzamiento, la línea directa ha dependido de subvenciones federales y asignaciones anuales. Un torrente de financiamiento fluyó cuando se lanzó el 988, “pero esas asignaciones anuales son algo por lo que tienes que seguir volviendo año tras año, por lo que el tema de la sostenibilidad es un poco más complicado”, dijo Wesolowski.

Es aquí donde entran en juego el Congreso y las legislaturas estatales.

Líderes de salud mental esperan impulsar una legislación que permita que el 988 sea financiado de la misma manera que el 911 a nivel nacional. El Wireless Communications and Public Safety Act de 1999 exigió que el 911 fuera el número de emergencia universal del país y, desde entonces, a los usuarios se les ha cobrado automáticamente, un promedio de aproximadamente un dólar al mes, en sus facturas telefónicas mensuales para financiarlo.

Seis estados han establecido un impuesto similar para el 988, y dos estados, Delaware y Oregon, tienen proyectos de ley para este impuesto en los escritorios de sus gobernadores.

La Federal Communications Commission (FCC) tiene el poder de imponer un impuesto a nivel nacional, pero la agencia federal aún no lo ha hecho.

This article was produced by KFF Health News, formerly known as Kaiser Health News (KHN), a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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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Tucked into the hundreds of pages of legislative language to reauthorize the Federal Aviation Administration is a provision to change the life-or-death process by which human organs are flown commercially from donor to recipient.

But where on the plane organs are stowed during flights has been a long-standing issue for organ procurement organizations.

The sweeping measure, which is pending in Congress and faces a Sept. 30 deadline, aims to change regulations and move organs to the cabin from an aircraft’s cargo hold. Organizations managing organ transport consider it an opportunity to secure legislative relief from a system they say adds more hurdles to the task of shipping organs.

It used to be that a member of a transplant team could take a packaged organ to a plane’s gate and hand it off to the aircraft’s crew, who would stow it in the cockpit or on the flight deck. This access “allowed us to really expedite the process,” said Jeff Orlowski, president and CEO of LifeShare Oklahoma, a nonprofit organ procurement organization in the state. But the terrorist attacks of 9/11 led to tighter security protocols, including a rule that permitted only people with tickets to go through Transportation Security Administration checkpoints.

“In our case, we don’t have a ticket,” said Casey Humphries, logistics service line leader of the United Network for Organ Sharing, the nonprofit contracted by the federal government to manage the nation’s transplant system. “We’re not booked as a passenger on a plane,” she said. Instead, they’re part of the relay network bringing the organs to people in need. Airport employees who work behind security checkpoints have an airport badge and usually get in through a designated entrance.

Another consequence of the 2001 policy changes was that donor organs flown on commercial airplanes — which are mostly kidneys — were stashed in cargo spaces below the wing along with boxes and luggage, said Humphries.

But shipping organs as cargo requires they be at the airport for loading one to two hours before takeoff. “That’s a significant time before the wheels go up for the plane,” said Orlowski. And that variable — the “hours that the organ is going to just sit, going nowhere” — has to be factored into decisions about where it can be sent, he said. Donated organs can’t be treated like a golf bag or an Amazon box. They are delicate and have an imminent expiration date, which for kidneys is usually within 24 hours of surgical removal.

Since January 2022, around 80% of organs recovered in Oklahoma were sent to another state to be transplanted, Orlowski said. And of the organs LifeShare recovers, about 35% of them are flown commercially. Since kidneys can survive in a cooler longer than other organs, nearly all organs that travel on commercial flights are kidneys.

The first choice for transporting an organ, he said, is usually to drive it to its destination; it’s cheaper, and the transplant team can be more watchful.

But that’s not always an option, especially in rural areas. Orlowski said there are only two transplant centers within driving distance of LifeShare’s Oklahoma City base, in Dallas and Fort Worth, Texas. So his team relies on commercial airlines for transportation.

The current air travel security rules also cause geographic disparities, as fewer cargo-carrying planes fly in and out of smaller airports in rural areas, compared with airports in bigger cities.

“We need something that is available 24 hours a day because organs are available 24 hours a day,” Humphries said.

Charter planes can be a backup option, but one flight can cost organ procurement organizations thousands of dollars, whereas cargo shipping costs usually come in at less than $500 per flight, Orlowski said.

Although the security protocol has been in place for more than two decades, transplant advocates say this is the first time they have sought a legislative reversal, and they are optimistic about the outcome.

The provision to allow organs back in cabins is included in both the Senate and House versions of the reauthorization bill. Some hot-button parts of the bill, though, such as an increase in the mandatory retirement age for pilots, could stall progress. The House Transportation and Infrastructure Committee approved its version on June 14, and at press time it was being debated on the House floor. The Senate Committee on Commerce, Science and Transportation is expected to consider its version this month, according to Senate staffers.

This article was produced by KFF Health News, formerly known as Kaiser Health News (KHN), a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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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