Just three of those that the Centers for Disease Control and Prevention says it will no longer routinely recommend — against hepatitis A, hepatitis B, and rotavirus — have prevented nearly 2 million hospitalizations and 90,000 deaths in the past 30 years, according to the CDC’s own publications. 

Federal and private insurance will still cover the vaccines. 

Experts on childhood disease were baffled by the change, which the Department of Health and Human Services said followed “a scientific review of the underlying science.” 

The vaccines are “held to a safety standard higher than any other medical intervention that we have,” said Lori Handy, a pediatric infectious disease specialist at the Children’s Hospital of Philadelphia. “The value of routine recommendations is that it really helps the public understand that this has been vetted upside down and backwards in every which way.”

Public health officials say the guidance puts the onus on parents to research each vaccine and its importance. Here’s what they prevent: 

RSV. Respiratory syncytial virus is the most common cause of hospitalization for infants in the U.S. It spreads in fall and winter, producing cold-like symptoms and causing tens of thousands of hospitalizations and hundreds of deaths yearly. 

Hepatitis A. Hepatitis A vaccination, recommended for all toddlers since 2006, has led to a more than 90% drop in the disease since 1996. The foodborne virus, which causes a wretched illness, still plagues adults, particularly people who are homeless or abuse drugs or alcohol, with 1,648 cases and 85 deaths reported in 2023. 

Hepatitis B. The disease causes liver cancer, cirrhosis, and other serious illnesses and is particularly dangerous when contracted by babies and young children. The hepatitis B virus is transmitted through blood and other bodily fluids, even in microscopic amounts, and can survive on surfaces for a week. From 1990 to 2019, vaccination resulted in a 99% decline in reported cases of acute hepatitis B among children and teens. Liver cancer among American children also plummeted with universal childhood vaccination. 

Rotavirus. Before routine administration of the current rotavirus vaccines began in 2006, 70,000 young children were hospitalized and 50 died yearly from the virus, known as “winter vomiting syndrome,” said Sean O’Leary, a University of Colorado pediatrician. “It was a miserable disease that we hardly see anymore.” 

Meningococcal disease. About 600 to 1,000 U.S. cases of meningococcal disease are reported yearly, killing more than 10% of those it sickens and leaving 1 in 5 survivors with a disability. 

Flu. The virus has killed hundreds of children in recent years, though it tends to be much more severe in older adults.

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Solo tres de las seis vacunas que los Centros para el Control y la Prevención de Enfermedades (CDC, por sus siglas en inglés) dejarán de recomendar de manera rutinaria —contra la hepatitis A, hepatitis B y el rotavirus— han prevenido casi 2 millones de hospitalizaciones y más de 90.000 muertes en los últimos 30 años, según publicaciones de la misma entidad.

Las vacunas contra esas tres enfermedades, así como contra el virus respiratorio sincitial (VRS), la enfermedad meningocócica, la gripe y covid, ahora solo se recomiendan para niños con alto riesgo de enfermedad grave o luego de “tomar decisiones clínicas de manera compartida”, es decir, una consulta entre médicos y padres.

Los CDC mantienen sus recomendaciones para 11 vacunas infantiles: contra el sarampión, las paperas y la rubéola; la tos ferina, el tétanos y la difteria; la enfermedad bacteriana conocida como Hib; la neumonía; la polio; la varicela; y el virus del papiloma humano (VPH).

Según una hoja informativa del Departamento de Salud y Servicios Humanos (HHS, por sus siglas en inglés), los seguros médicos públicos y privados seguirán cubriendo las vacunas contra las enfermedades que los CDC ya no recomiendan de manera universal; los padres que quieran vacunar a sus hijos contra esas enfermedades no tendrán que pagar las dosis de su bolsillo.

Expertos en enfermedades infantiles se mostraron desconcertados ante el cambio en la guía. El HHS explicó que las modificaciones se hicieron tras “una revisión científica de la evidencia” y que están alineadas con programas de vacunación de otros países desarrollados.

El secretario del HHS, Robert F. Kennedy Jr., un activista antivacunas, señaló a Dinamarca como modelo. Sin embargo, los calendarios de vacunación de la mayoría de los países europeos son más parecidos al estándar estadounidense que acaba de modificarse.

Por ejemplo, Dinamarca, que no vacuna contra el rotavirus, registra cerca de 1.200 hospitalizaciones al año por esta infección  en bebés y niños pequeños. Esa tasa, en un país de 6 millones de habitantes, es similar a la que tenía Estados Unidos antes de introducir la vacuna.

“Ellos aceptan tener 1.200 o 1.300 niños hospitalizados, lo cual es solo la punta del iceberg en cuanto al sufrimiento infantil”, dijo Paul Offit, director del Centro de Educación sobre Vacunas del Hospital Infantil de Philadelphia y coinventor de una vacuna contra el rotavirus aprobada. “Nosotros no lo aceptamos. Deberían tratar de imitarnos a nosotros, no al revés”.

Funcionarios de salud pública señalaron que la nueva guía pone sobre los padres la responsabilidad de investigar y comprender cada vacuna infantil y por qué es importante.

El siguiente es un resumen de las enfermedades que previenen las vacunas que se han dejado de lado:

VRS. El virus respiratorio sincitial es la causa más común de hospitalización en bebés en Estados Unidos.

Este virus respiratorio suele circular en otoño e invierno y provoca síntomas parecidos a los de un resfriado, aunque puede ser mortal para los niños pequeños. Cada año causa decenas de miles de hospitalizaciones y cientos de muertes. Según la Fundación Nacional de Enfermedades Infecciosas (National Foundation for Infectious Diseases), aproximadamente el 80% de los niños menores de 2 años hospitalizados con el VRS no tienen factores de riesgo identificables. Las esperadas vacunas contra esta enfermedad se introdujeron en 2023.

Hepatitis A. La vacunación contra la hepatitis A, que se empezó a aplicar gradualmente a finales de los años 90 y se recomendó para todos los niños pequeños a partir de 2006, ha provocado una reducción de más del 90% de los casos desde 1996. Este virus transmitido por alimentos causa una enfermedad muy desagradable que aún afecta a adultos, especialmente personas sin hogar o que consumen drogas o alcohol. En 2023 se reportaron un total de 1.648 casos y 85 muertes.

Hepatitis B. Esta enfermedad provoca cáncer de hígado, cirrosis y otros padecimientos graves, y es particularmente peligrosa cuando la contraen bebés o niños pequeños. El virus de la hepatitis B se transmite por sangre y otros fluidos corporales, incluso en cantidades microscópicas, y puede sobrevivir en superficies durante una semana. Entre 1990 y 2019, la vacunación generó una reducción del 99% en los casos reportados de hepatitis B aguda en niños y adolescentes. El cáncer de hígado en menores también ha disminuido considerablemente gracias a la vacunación infantil universal. Sin embargo, el virus sigue presente, con entre 2.000 y 3.000 casos agudos reportados cada año entre adultos no vacunados. En 2023 se diagnosticaron más de 17.000 casos de hepatitis B crónica. Los CDC estiman que cerca de la mitad de las personas infectadas no saben que lo están.

Rotavirus. Antes de que comenzara la administración rutinaria de las actuales vacunas contra el rotavirus, en 2006, cada año se internaban a unos 70.000 niños pequeños, y morían alrededor de 50 a causa del virus. “Se conocía como el síndrome del vómito invernal”, explicó Sean O’Leary, pediatra de la Universidad de Colorado. “Era una enfermedad terrible, que casi ya no vemos”.

Sin embargo, el virus sigue siendo común en las superficies que tocan los bebés, y “si bajan las tasas de vacunación, habrá de nuevo niños hospitalizados”, advirtió Offit.

Vacunas meningocócicas. Estas vacunas han sido requeridas principalmente para adolescentes y estudiantes universitarios, quienes son especialmente vulnerables a enfermedades graves causadas por esta bacteria. En Estados Unidos se reportan entre 600 y 1.000 casos al año, pero más del 10% de los enfermos mueren, y 1 de cada 5 sobrevivientes queda con discapacidades permanentes.

Gripe y covid. Estos dos virus respiratorios han causado la muerte de cientos de niños en años recientes, aunque suelen ser más graves en adultos mayores. Actualmente hay un repunte de la gripe en el país, y durante la temporada pasada murieron 289 menores por esta causa.

¿Qué es la toma de decisiones clínicas compartida?

Con los nuevos cambios, la decisión de vacunar a los niños contra la gripe, covid, el rotavirus, la enfermedad meningocócica y las hepatitis A y B dependerá ahora de lo que las autoridades llaman “toma de decisiones clínicas compartida”, es decir, que las familias deberán consultar con un proveedor de salud para determinar si la vacuna es apropiada para sus hijos.

“Significa que el proveedor debe tener una conversación con el paciente para explicar los riesgos y beneficios y tomar una decisión personalizada”, dijo Lori Handy, especialista en enfermedades infecciosas pediátricas del Hospital Infantil de Philadelphia.

Antes, los CDC usaban ese término solo en circunstancias muy específicas, como al decidir si una persona en una relación monógama necesitaba la vacuna contra el VPH, que previene una infección de transmisión sexual y ciertos tipos de cáncer.

Según Handy, el nuevo enfoque de los CDC no se alinea con la evidencia científica, dado el beneficio protector comprobado que las vacunas ofrecen a la gran mayoría de la población.

En su informe justificando los cambios, los funcionarios del HHS Tracy Beth Høeg y Martin Kulldorff afirmaron que el sistema de vacunación de Estados Unidos requiere más investigación sobre seguridad y mayor elección por parte de los padres. Dijeron que la pérdida de confianza en la salud pública, causada en parte por un calendario de vacunación demasiado extenso, ha llevado a más familias a rechazar vacunas contra amenazas importantes como el sarampión.

Las vacunas en el calendario que fue modificado por los CDC ya contaban con amplia investigación sobre seguridad cuando fueron evaluadas y aprobadas por la Administración de Alimentos y Medicamentos (FDA, por sus siglas en inglés).

“Estas vacunas tienen un estándar de seguridad más alto que cualquier otra intervención médica que tenemos”, dijo Handy. “El valor de las recomendaciones rutinarias es que ayudan al público a entender que estas vacunas han sido examinadas por todos lados”.

Eric Ball, pediatra en el condado de Orange, California, apuntó que el cambio en la guía provocará más confusión entre los padres, quienes podrían pensar que es la seguridad de una vacuna lo que está en duda.

“Para la salud pública, es fundamental que las recomendaciones sobre vacunas sean muy claras y precisas”, dijo Ball. “Cualquier cosa que genere confusión solo llevará a que más niños se enfermen”.

Ball explicó que, en lugar de enfocarse en las necesidades médicas del niño, muchas veces tiene que usar el tiempo limitado de consulta para asegurar a los padres que las vacunas son seguras. El hecho de que una vacuna quede bajo “toma de decisiones clínicas compartida” no tiene nada que ver con preocupaciones de seguridad, pero muchos padres podrían interpretarlo así.

Los cambios del HHS no afectan las leyes estatales de vacunación y, por lo tanto, deberían permitir que los médicos responsables sigan recomendando las vacunas como hasta ahora, según Richard Hughes IV, abogado y profesor en la Universidad George Washington, quien lidera demandas contra Kennedy por los cambios en materia de vacunas.

“Uno puede esperar que cualquier pediatra siga la evidencia científica sólida y recomiende que sus pacientes se vacunen”, dijo. La ley protege a los proveedores que siguen las pautas profesionales de atención, agregó, y “el VRS, la enfermedad meningocócica y las hepatitis siguen siendo amenazas graves para la salud de los niños en este país”.

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Just three of the six immunizations the Centers for Disease Control and Prevention says it will no longer routinely recommend — against hepatitis A, hepatitis B, and rotavirus — have prevented nearly 2 million hospitalizations and more than 90,000 deaths in the past 30 years, according to the CDC’s own publications.

Vaccines against the three diseases, as well as those against respiratory syncytial virus, meningococcal disease, flu, and covid, are now recommended only for children at high risk of serious illness or after “shared clinical decision-making,” or consultation between doctors and parents.

The CDC maintained its recommendations for 11 childhood vaccines: measles, mumps, and rubella; whooping cough, tetanus, and diphtheria; the bacterial disease known as Hib; pneumonia; polio; chickenpox; and human papillomavirus, or HPV.

Federal and private insurance will still cover vaccines for the diseases the CDC no longer recommends universally, according to a Department of Health and Human Services fact sheet; parents who want to vaccinate their children against those diseases will not have to pay out-of-pocket.

Experts on childhood disease were baffled by the change in guidance. HHS said the changes followed “a scientific review of the underlying science” and were in line with vaccination programs in other developed nations.

HHS Secretary Robert F. Kennedy Jr., an anti-vaccine activist, pointed to Denmark as a model. But the schedules of most European countries are closer to the U.S. standard upended by the new guidance.

For example, Denmark, which does not vaccinate against rotavirus, registers around 1,200 infant and toddler rotavirus hospitalizations a year. That rate, in a country of 6 million, is about the same as it was in the United States before vaccination.

“They’re OK with having 1,200 or 1,300 hospitalized kids, which is the tip of the iceberg in terms of childhood suffering,” said Paul Offit, the director of the Vaccine Education Center at the Children’s Hospital of Philadelphia and a co-inventor of a licensed rotavirus vaccine. “We weren’t. They should be trying to emulate us, not the other way around.”

Public health officials say the new guidance puts the onus on parents to research and understand each childhood vaccine and why it is important.

Here’s a rundown of the diseases the sidelined vaccines prevent:

RSV. Respiratory syncytial virus is the most common cause of hospitalization for infants in the U.S.

The respiratory virus usually spreads in fall and winter and produces cold-like symptoms, though it can be deadly for young children, causing tens of thousands of hospitalizations and hundreds of deaths a year. According to the National Foundation for Infectious Diseases, roughly 80% of children younger than 2 who are hospitalized with RSV have no identifiable risk factors. Long-awaited vaccines against the disease were introduced in 2023.

Hepatitis A. Hepatitis A vaccination, which was phased in beginning in the late 1990s and recommended for all toddlers starting in 2006, has led to a more than 90% drop in the disease since 1996. The foodborne virus, which causes a wretched illness, continues to plague adults, particularly people who are homeless or who abuse drugs or alcohol, with a total of 1,648 cases and 85 deaths reported in 2023.

Hepatitis B. The disease causes liver cancer, cirrhosis, and other serious illnesses and is particularly dangerous when contracted by babies and young children. The hepatitis B virus is transmitted through blood and other bodily fluids, even in microscopic amounts, and can survive on surfaces for a week. From 1990 to 2019, vaccination resulted in a 99% decline in reported cases of acute hepatitis B among children and teens. Liver cancer among American children has also plummeted as a result of universal childhood vaccination. But the hepatitis B virus is still around, with 2,000-3,000 acute cases reported annually among unvaccinated adults. More than 17,000 chronic hepatitis B diagnoses were reported in 2023. The CDC estimates about half of people infected don’t know they have it.

Rotavirus. Before routine administration of the current rotavirus vaccines began in 2006, about 70,000 young children were hospitalized and 50 died every year from the virus. It was known as “winter vomiting syndrome,” said Sean O’Leary, a pediatrician at the University of Colorado. “It was a miserable disease that we hardly see anymore.”

The virus is still common on surfaces that babies touch, however, and “if you lower immunization rates it will once again hospitalize children,” Offit said.

Meningococcal disease. Vaccines have been required mainly for teenagers and college students, who are notably vulnerable to critical illness caused by the bacteria. About 600 to 1,000 cases of meningococcal disease are reported in the U.S. each year, but it kills more than 10% of those it sickens, and 1 in 5 survivors have permanent disabilities.

Flu and covid. The two respiratory viruses have each killed hundreds of children in recent years — though both tend to be much more severe in older adults. Flu is currently on the upswing in the United States, and last flu season the virus killed 289 children.

What is shared clinical decision-making?

Under the changes, decisions about vaccinating children against influenza, covid, rotavirus, meningococcal disease, and hepatitis A and B will now rely on what officials call “shared clinical decision-making,” meaning families will have to consult with a health care provider to determine whether a vaccine is appropriate.

“It means a provider should have a conversation with the patient to lay out the risks and the benefits and make a decision for that individual person,” said Lori Handy, a pediatric infectious disease specialist at the Children’s Hospital of Philadelphia.

In the past, the CDC used that term only in reference to narrow circumstances, like whether a person in a monogamous relationship needed the HPV vaccine, which prevents a sexually transmitted infection and certain cancers.

The CDC’s new approach doesn’t line up with the science because of the proven protective benefit the vaccines have for the vast majority of the population, Handy said.

In their report justifying the changes, HHS officials Tracy Beth Høeg and Martin Kulldorff said the U.S. vaccination system requires more safety research and more parental choice. Eroding trust in public health caused in part by an overly large vaccine schedule had led more parents to shun vaccination against major threats like measles, they said.

The vaccines on the schedule that the CDC has altered were backed up by extensive safety research when they were evaluated and approved by the FDA.

“They’re held to a safety standard higher than any other medical intervention that we have,” Handy said. “The value of routine recommendations is that it really helps the public understand that this has been vetted upside down and backwards in every which way.”

Eric Ball, a pediatrician in Orange County, California, said the change in guidance will cause more confusion among parents who think it means a vaccine’s safety is in question.

“It is critical for public health that recommendations for vaccines are very clear and concise,” Ball said. “Anything to muddy the water is just going to lead to more children getting sick.”

Ball said that instead of focusing on a child’s individual health needs, he often has to spend limited clinic time reassuring parents that vaccines are safe. A “shared clinical decision-making” status for a vaccine has no relationship to safety concerns, but parents may think it does.

HHS’ changes do not affect state vaccination laws and therefore should allow prudent medical practitioners to carry on as before, said Richard Hughes IV, an attorney and a George Washington University lecturer who is leading litigation against Kennedy over vaccine changes.

“You could expect that any pediatrician is going to follow sound evidence and recommend that their patients be vaccinated,” he said. The law protects providers who follow professional care guidelines, he said, and “RSV, meningococcal, and hepatitis remain serious health threats for children in this country.”

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Una de sus pacientes tenía 17 años cuando la examinó por dolor estomacal. McMahon descubrió que había desarrollado cáncer de hígado causado por hepatitis B, apenas unas semanas antes de graduarse de la secundaria como la mejor estudiante.

Murió antes de la ceremonia.

McMahon también recuerda a un niño de 8 años que no mostraba signos de enfermedad hasta que se quejó de dolor: resultó ser un tumor de rápido crecimiento en el hígado. Aún puede escuchar su voz.

“Gemía de dolor diciendo: ‘Sé que voy a morir pronto’”, recordó. “Todos estábamos llorando”. El niño murió en casa una semana después.

El virus de la hepatitis B se transmite a través de la sangre y otros fluidos corporales, incluso en cantidades microscópicas, y puede sobrevivir en superficies durante una semana. Como muchos de sus pacientes, McMahon explicó que ambos niños contrajeron hepatitis B al nacer o en la infancia temprana.

Ese desenlace hoy se puede prevenir.

Una dosis de la vacuna al nacer, recomendada para recién nacidos desde 1991, es hasta 90% efectiva para prevenir la infección transmitida por la madre si se administra en las primeras 24 horas de vida. Si los bebés reciben las tres dosis, el 98% desarrolla inmunidad contra este virus incurable, con una protección que dura al menos 30 años.

En las comunidades del oeste de Alaska, años de pruebas dirigidas y campañas amplias de vacunación lograron que los casos se redujeran dramáticamente.

“El cáncer de hígado ha desaparecido en los niños”, dijo McMahon. “No hemos visto un solo caso desde 1995. Tampoco tenemos, que sepamos, nadie menor de 30 años que se haya infectado”.

Le preocupa que estos avances obtenidos con mucho esfuerzo puedan retroceder.

¿Retrasar la dosis?

Un comité asesor sobre vacunas de los Centros para el Control y  Prevención de Enfermedades (CDC, por su siglas en inglés), nombrado por el secretario de Salud y Servicios Humanos Robert F. Kennedy Jr., tiene previsto discutir y votar el 4 de diciembre si se mantiene la recomendación de administrar la dosis de hepatitis B al nacer.

La medida podría limitar el acceso de los niños a la vacuna.

En el podcast de Tucker Carlson en junio, Kennedy afirmó falsamente que la dosis de hepatitis B al nacer es una “causa probable” de autismo.

También dijo que el virus de la hepatitis B no es “casualmente contagioso”. Pero décadas de estudios demuestran que el virus puede transmitirse por contacto indirecto, cuando restos de fluidos infectados, como la sangre, entran al cuerpo al compartir objetos personales como rasuradoras o cepillos de dientes.

Las recomendaciones de este comité tienen gran influencia. La mayoría de los seguros privados están obligados a cubrir las vacunas que el Comité Asesor sobre Prácticas de Inmunización (ACIP, por sus siglas en inglés) aprueba, y muchas políticas estatales de vacunación se basan directamente en esas guías.

Pero ni el ACIP ni los CDC tienen funciones regulatorias: no pueden imponer vacunas obligatorias. Esa responsabilidad recae en los estados. Sin embargo, mantener la recomendación de administrar la vacuna al nacer permite que las familias tengan la mayor cantidad de opciones: pueden elegir vacunar desde el nacimiento, esperar hasta más adelante o no vacunar. Y el seguro continuará cubriendo el costo de la vacuna mientras siga estando aprobada por la Administración de Alimentos y Medicamentos (FDA, por sus siglas en inglés).

Dos altos funcionarios de la FDA —el comisionado Marty Makary y el principal regulador de vacunas Vinay Prasad— sugirieron a finales de noviembre que podrían venir cambios en el proceso de aprobación de vacunas. Todas las vacunas deben estar aprobadas por la FDA para ser administradas en Estados Unidos.

En correos internos obtenidos por PBS NewsHour y The Washington Post, Prasad cuestionó la práctica rutinaria de “aplicar múltiples vacunas al mismo tiempo”.

No está claro si se refería a las vacunas combinadas, que protegen contra varias enfermedades en una sola dosis. Tres de las nueve vacunas contra la hepatitis B actualmente aprobadas por la FDA son combinadas. Sin embargo, la dosis al nacer se aplica solamente como una vacuna individual.

“Sembrando desconfianza”

Aunque los seguros privados continúen cubriendo esta vacuna, la desinformación que surja de esa reunión podría llevar a que algunas familias crean erróneamente que puede hacerle daño a sus bebés, advirtió Sean O’Leary, presidente del Comité de Enfermedades Infecciosas de la Academia Americana de Pediatría (American Academy of Pediatrics) y profesor asistente en la Escuela de Medicina de la Universidad de Colorado.

“Lo que salga de este desastre de reunión en diciembre estará principalmente diseñado para sembrar desconfianza y esparcir miedo”, expresó.

El presidente Donald Trump, Kennedy y algunos de los nuevos miembros del ACIP han distorsionado cómo se transmite esta enfermedad hepática, ignorando o minimizando el riesgo del contagio indirecto.

El virus de la hepatitis B es mucho más contagioso que el VIH. Las personas no vacunadas, incluidos los niños, pueden infectarse con cantidades microscópicas de sangre en una mesa o un juguete, incluso si la persona infectada no presenta síntomas.

McMahon ha atendido a niños que dieron negativo al nacer y luego se infectaron por contacto indirecto. En un estudio de la década de 1970, casi un tercio de esos niños desarrolló hepatitis B crónica sin mostrar síntomas, explicó.

“Es un virus muy contagioso”, dijo McMahon. “Por eso dar la dosis al nacer a todos es la mejor manera de prevenirlo”.

Los CDC recomiendan que todas las personas embarazadas se hagan la prueba de hepatitis B, pero estiman que hasta un 16% no se la realiza y queda fuera de los registros. O’Leary y otros expertos dicen que hacer pruebas justo antes o después del parto no es factible, ya que la mayoría de los hospitales no tiene el personal ni los recursos suficientes.

La vacuna de tres dosis tiene un historial largo de seguridad. Numerosos estudios demuestran que no está asociada con un mayor riesgo de muerte infantil, fiebre o sepsis, esclerosis múltiple ni enfermedades autoinmunes. Las reacciones graves son poco comunes.

“Tenemos un perfil de seguridad excelente”, dijo O’Leary. “Nadie espera chocar en auto, ¿cierto? Pero igual todos usamos el cinturón de seguridad. Esto es similar”.

Los CDC estiman que 2,4 millones de personas en el país tienen hepatitis B, y que la mitad no sabe que está infectada. La enfermedad puede ir desde una infección aguda hasta una crónica, a menudo sin síntomas. Si no se trata, puede provocar cirrosis, insuficiencia hepática y cáncer de hígado. No tiene cura.

Recomendación para padres: hablar con su doctor

William Schaffner, profesor de medicina preventiva en la Escuela de Medicina de la Universidad de Vanderbilt y ex miembro con voto del ACIP, dijo que algunos padres tienen dificultad para entender por qué un recién nacido sano necesita una vacuna tan pronto, especialmente contra un virus que están convencidos de no tener y que a menudo asocian solo con conductas de riesgo. Esa percepción, señaló, se mezcla con la creciente desconfianza en la salud pública y el escepticismo hacia las vacunas.

Su consejo para futuros padres que están indecisos es hablar con su médico sobre las vacunas. Incluso si la embarazada dio negativo en la prueba, dijo, sigue siendo importante administrar la dosis al nacer, ya que pueden ocurrir falsos negativos y el virus se puede propagar fácilmente a través del contacto con superficies.

Los bebés que reciben la serie completa de vacunas desde el nacimiento tienen 84% menos probabilidad de desarrollar cáncer de hígado.

“Si uno espera un mes y la madre resulta ser positiva, o el bebé se contagia de un cuidador, para entonces la infección ya está establecida en el hígado del bebé”, explicó Schaffner. “Ya es demasiado tarde para prevenirla”.

Agregó que, si menos personas se vacunan, la hepatitis B circulará más en las comunidades estadounidenses y el riesgo de infección aumentará para quienes no se vacunen.

Y más casos de hepatitis B también podrían significar mayores costos tanto para los pacientes como para el sistema de salud.

Los CDC calculan que tratar a una persona con una forma menos grave de la enfermedad cuesta entre $25.000 y $94.000 al año. Para quienes necesitan un trasplante de hígado, los gastos médicos anuales pueden superar los $320.000, dependiendo del tratamiento.

Durante los últimos 30 años, los principales efectos secundarios que han reportado los padres tras la aplicación de la dosis al nacer han sido llanto e irritabilidad, síntomas que desaparecen rápidamente. Schaffner dijo que eso demuestra un perfil de seguridad muy sólido para una vacuna en recién nacidos que protege contra una enfermedad incurable.

“Los datos son clarísimos sobre esto”, agregó. “Ahora hay toda una serie de países que han iniciado este programa. Lo han tomado como modelo del nuestro”.

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Working out of a tribal-owned hospital in Anchorage, Alaska, liver specialist Brian McMahon has spent decades treating the long shadow of hepatitis B. Before a vaccine became available in the 1980s, he saw the virus claim young lives in western Alaskan communities with stunning speed.

One of his patients was 17 years old when he first examined her for stomach pain. McMahon discovered she had developed liver cancer caused by hepatitis B, just weeks before she was set to graduate from high school as valedictorian. She died before the ceremony.

McMahon thinks often of an 8-year-old boy who showed no signs of illness until he complained of pain from what turned out to be a rapidly growing tumor on his liver.

McMahon can still hear his voice.

“He was moaning in pain, saying, ‘I know I am going to die soon,’” he recalled. “We were all crying.” The boy died at home a week later.

The hepatitis B virus is transmitted through blood and bodily fluids, even in microscopic amounts, and the virus can survive on surfaces for a week. Like many of his patients, McMahon said, both children contracted hepatitis B at birth or in early childhood.

That outcome is now preventable. A birth dose of the vaccine, recommended for newborns since 1991, is up to 90% effective in preventing infection from the mother if given in the first 24 hours of life. If babies receive all three doses, 98% of them have immunity from the incurable virus, with the protection lasting at least 30 years.

In the communities of western Alaska, years of targeted testing and widespread vaccination efforts led to the number of cases plummeting.

“Liver cancer has disappeared in children,” McMahon said. “We haven’t seen a case since 1995. Nor do we have any children under 30 that have gotten infected that we know of.”

He worries those hard-won gains could soon be rolled back.

Pushing Back the Dose?

A Centers for Disease Control and Prevention vaccine advisory panel appointed by Health and Human Services Secretary Robert F. Kennedy Jr. is scheduled to discuss and vote on the hepatitis B birth dose recommendation during its two-day meeting starting Dec. 4, potentially limiting children’s access.

On Tucker Carlson’s podcast in June, Kennedy falsely claimed that the hepatitis B birth dose is a “likely culprit” of autism.

He also said the hepatitis B virus is not “casually contagious.” But decades of research shows the virus can be transmitted through indirect contact, when traces of infected fluids like blood enter the body when people share personal items like razors or toothbrushes.

The committee’s recommendations carry weight. Most private insurers must cover the vaccines the Advisory Committee on Immunization Practices endorses, and many state vaccination policies are directly linked to its guidelines.

Neither ACIP nor the CDC is regulatory. They cannot mandate immunizations. It’s up to states to do that. But keeping the recommendation for a hepatitis B vaccine at birth preserves the widest range of options for families. They can choose to vaccinate at birth, wait until later in childhood, or not vaccinate at all, and insurance will continue to cover the cost of the shot as long as it remains approved by the Food and Drug Administration.

Two senior FDA officials — Commissioner Marty Makary and top vaccine regulator Vinay Prasad — suggested at the end of November that changes to the vaccine approval process may be coming. Vaccines must be approved by the FDA to be administered in the United States.

In internal agency emails obtained by PBS NewsHour and The Washington Post, Prasad questioned the routine practice of “giving multiple vaccines at the same time.” It’s not clear whether he was referring to combination vaccines that offer immunity against multiple diseases with a single shot. Three of the nine hepatitis B vaccines currently approved by the FDA are combination vaccines. The birth dose of the hepatitis B vaccine is given only as a stand-alone vaccine.

Contacted for comment, Health and Human Services spokesperson Emily Hilliard said in a statement that “ACIP will review the evidence at its meeting this week and issue recommendations based on gold standard, evidence-based science and common sense.”

‘Sowing Distrust’

If private insurers opt to still cover the shot, misinformation from the meeting still could lead families to falsely believe the vaccine could harm their babies, said Sean O’Leary, chair of the Committee on Infectious Diseases for the American Academy of Pediatrics and an assistant professor of pediatrics at the University of Colorado School of Medicine.

“Whatever comes out of this disaster of a meeting in December is going to be mainly designed around sowing distrust and spreading fear,” he said.

President Donald Trump, Kennedy, and some newly appointed ACIP members have mischaracterized how the liver disease spreads, ignoring or downplaying the risk of transmission through indirect contact. The hepatitis B virus is far more infectious than HIV. Unvaccinated people, including children, can get infected from microscopic amounts of blood on a tabletop or toy, even when the infected person is asymptomatic.

McMahon has cared for children who tested negative at birth and later became infected through indirect contact. In a study in the 1970s, nearly a third of such children went on to develop chronic hepatitis B without ever showing symptoms, he said.

“It’s a very infectious virus,” McMahon said. “That’s why giving everybody the birth dose is the best way to prevent it.”

The CDC recommends that all pregnant people be screened for hepatitis B, but it estimates that up to 16% are not tested and fall through the cracks. O’Leary and other experts say testing mothers for the virus shortly before or after delivery is unfeasible, because most hospitals lack the staff and resources.

The three-dose vaccine has a long track record of safety. Numerous studies show it is not associated with an increased risk of infant death, fever or sepsis, multiple sclerosis, or autoimmune conditions, and severe reactions are rare.

“We have an incredible safety profile,” O’Leary said. “No one expects to get in a car wreck, right? And yet we all put our seat belts on. This is similar.”

The CDC estimates that 2.4 million people in the U.S. have hepatitis B and that half do not know they are infected. The disease can range from an acute infection to a chronic one, often with few to no symptoms. If the disease is left untreated, it can lead to serious conditions such as cirrhosis, liver failure, and liver cancer. There is no cure.

Expert’s Advice to Parents: Talk to a Doctor

William Schaffner, a professor of preventative medicine at the Vanderbilt University School of Medicine and a former voting member of ACIP, said some parents struggle to understand why a healthy newborn needs a vaccine so soon after birth, especially for a virus they feel certain they don’t have and often wrongly associate only with risky behaviors. Those perceptions, he said, mix with declining trust in public health and rising skepticism about vaccines.

His advice to expectant parents who are on the fence is to talk to their doctor about the shots. Even if the pregnant woman has tested negative, he said, it’s still important to give the baby the birth dose, because false negatives are possible and because the virus can spread so easily from surface contact. Babies who receive the full vaccine series starting from birth have their chance of liver cancer reduced by 84%.

“If you wait a month and if the mom happens to be positive, or the baby picks it up from a caregiver, by that time the infection is established in that baby’s liver,” Schaffner said. “It’s too late to prevent that infection.”

He said that if fewer people get vaccinated, hepatitis B will circulate at higher rates in American communities and the risk of contracting the virus will rise for everyone who doesn’t get the shots.

And more hepatitis B cases could mean higher costs for patients and the broader health care system. The CDC estimates treating someone with a less severe form of the disease costs $25,000 to $94,000 per year. For patients who require a liver transplant, annual medical expenses can climb above $320,000, depending on their treatment.

Over the past 30 years, the main adverse events parents have reported from their babies receiving the birth dose have been fussiness and crying, both of which pass quickly. Schaffner said that’s a very strong safety profile — for a newborn vaccine with a track record of protecting babies from an incurable disease.

“The data are so clear about this,” Schaffner said. “A whole array now of other countries have initiated this program. They’ve modeled it on us.”

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Both President Donald Trump and some newly appointed ACIP members have mischaracterized how the liver disease spreads, according to medical experts, including those working at the CDC. The ACIP panel’s recommendations can determine insurance coverage for immunizations.

At a White House press conference on Sept. 22, Trump, in advocating for delaying the newborn vaccine dose, falsely claimed that hepatitis B is solely a sexually transmitted infection.

“Hepatitis B is sexually transmitted. There’s no reason to give a baby that’s almost just born hepatitis B. So I would say wait till the baby is 12 years old and formed and take hepatitis B,” Trump said.

Hepatitis B is a highly infectious virus that attacks the liver and is transmitted through contact with infected bodily fluids, including blood. It can also be passed from mother to baby.

A reporter asked if Trump had spoken with Health and Human Services Secretary Robert F. Kennedy Jr., who oversees the CDC, about making the change, and Trump said he had, as Kennedy looked on.

Although hepatitis B is often associated with high-risk behaviors such as injection drug use or having multiple sexual partners, health experts, including career CDC scientists, note that the virus can be transmitted in ordinary situations too, including among young children.

At the latest ACIP meeting, held Sept. 18 and 19, members debated postponing the hepatitis B newborn dose until 1 month of age.

CDC scientist Adam Langer outlined research showing incidences of unvaccinated children born in the U.S. to mothers who tested negative, later becoming infected with hepatitis B. Langer serves as acting principal deputy director for the National Center for HIV, Viral Hepatitis, STD, and Tuberculosis Prevention.

Langer told the vaccine advisory panel that the virus can survive for over seven days outside the body on surfaces. During that time, contact with even microscopic traces of infected blood on a school desk or on playground or sporting equipment is enough for a child to be infected. This means unvaccinated children not considered at high risk can still be exposed in everyday environments, or by an infected caregiver.

“We do have data that says that it can happen and that it is likely to happen,” he said. Though the exact cause of infection may not be clear in documented cases of children of hepatitis B-negative mothers becoming infected, “I can tell you that it didn’t come from the mother and it didn’t come from injection drug use and it didn’t come from sexual contact, so that means that it had to have been some kind of casual contact,” Langer said.

Yet during the debate, some members gave little credence to the risk of transmission to children through household contact.

“This is a very, very important vaccine that should be given to the high-risk populations,” said ACIP voting member Retsef Levi, a professor of operations management at the MIT Sloan School of Management. “The high-risk populations seem to be babies born to hep B-positive mothers, drug addicts, and other populations at high risk,” he said, despite Langer’s presentation highlighting other avenues of possible transmission.

Contrary to research that was presented, Levi later said the risk of not vaccinating children of hepatitis B-negative mothers was “probably close to zero” in the first few years of life.

The CDC estimates 2.4 million people in the U.S. have hepatitis B and half do not know they are infected. The disease can range from an acute, mild infection to a chronic infection, often with few to no symptoms. The disease has no cure and, if left untreated, can lead to serious conditions like cirrhosis, liver failure, and liver cancer later in life.

During debate on the vote to delay the newborn dose, ACIP member Joseph Hibbeln said that the proposed one-month gap would leave some children vulnerable to the virus, even if their mothers test negative for hepatitis B.

“This assumes implicitly that all the infections are coming from moms,” Hibbeln said. “You can’t decide on that simply by the mother’s status. You would have to look at the entire household’s status.”

ACIP member Evelyn Griffin, an obstetrician and gynecologist, asserted that doctors could ascertain an entire household’s hepatitis B status by asking the mother.

“How are they going to know?” Hibbeln said. “If 50% of people don’t know that they are hepatitis B-positive, you can ask all you want, and nobody knows.”

The committee members, all handpicked by Kennedy, ultimately decided to table the vote on whether to delay the newborn dose after Hibbeln brought up inconsistencies in the wording of the text of the resolution.

“The notion that hepatitis B is only confined to transmission for prostitutes, drug users, etc. is such an ignorant and uninformed way of approaching infectious disease,” internist Jason Goldman, the president of the American College of Physicians and its liaison to ACIP, said when reached after the meeting.

“The virus does not care what your behavior or lifestyle is. The virus goes from person to person through bodily fluids,” Goldman said. It can be transmitted when an unvaccinated person touches infected bodily fluids on common surfaces and then accidentally touches the eyes or mouth. “What if someone was in a car accident and got exposed to blood?”

“It is not only mother-to-fetus transmission, it is not only certain risk groups,” he said. “This is why it’s universal; everyone should get this for their protection, and it is unfortunate that it is being politicized into a sexually transmitted disease and that’s it. That’s not an appropriate way to evaluate science.”

Pediatric vaccination recommendations are widely credited with nearly eliminating the virus in American-born children.

Babies infected at birth have a 90% chance of developing chronic hepatitis B, and a quarter of those children go on to have severe complications, like liver cancer, or to die from the disease.

In 1991, federal health officials determined newborns should receive their first dose of a hepatitis B vaccine within 24 hours of birth, which can block the virus from taking hold if transmitted during delivery. From 1990 to 2022, case rates of hepatitis B declined by more than 99%. While parents may opt out of the shots, many day care centers and school districts require proof of hepatitis B vaccination for enrollment.

The next meeting of the ACIP is scheduled to begin Oct. 22. Agendas are usually posted weeks in advance, but so far, no information on the substance of the upcoming meeting has appeared on the CDC’s website. The agenda for the September meeting was posted less than a week before the meeting’s start.

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From confusing policy language to coding errors to shifting insurer rules, a new episode of NPR’s “Life Kit” podcast explores why denials happen and how to avoid common pitfalls.

KFF Health News reporter Jackie Fortiér and “Life Kit” host Marielle Segarra discuss the intricate and sometimes infuriating process of dealing with denied health claims. It’s an issue lots of people run into — but don’t necessarily talk about.

Fortiér and Segarra offer tips backed by real-life examples and expert advice, so you’ll know whom to call, what to say, and how being a pest in the right way might save you money.

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“There is going to likely be a discussion about hepatitis B vaccine, very specifically trying to dislodge the birth dose of hepatitis B vaccine and to push it later in life,” said Demetre Daskalakis, former director of the National Center for Immunization and Respiratory Diseases. “Apparently this is a priority of the secretary’s.”

The vote was expected to take place during the next meeting of the CDC’s Advisory Committee on Immunization Practices, scheduled for Sept. 18-19.

For more than 30 years, the first of three shots of hepatitis B vaccine has been recommended for infants shortly after birth. In that time, the potentially fatal disease has been virtually eradicated among American children. Pediatricians warn that waiting four years for the vaccine opens the door to more children contracting the virus.

“Age 4 makes zero sense,” pediatrician Eric Ball said. “We recommend a universal approach to prevent those cases where a test might be incorrect or a mother might have unknowingly contracted hepatitis. It’s really the best way to keep our entire population healthy.”

In addition to the hepatitis B vaccine, the panel will also discuss and vote on recommendations for the combined measles, mumps, rubella, and varicella vaccine and covid-19 vaccines. Pediatricians worry changes to the schedules of these vaccines will limit access for many families, leaving them vulnerable to vaccine-preventable diseases.

Typically, ACIP would undertake an analysis of the data before recommending a change to vaccine guidelines. As of the end of August, this process had not begun for the hepatitis B vaccines, Daskalakis and another former official said.

“This is an atypical situation. There’s been no work group to discuss it,” Daskalakis said.

The second former senior official spoke to NPR and KFF Health News on the condition of anonymity.

In response to questions from KFF Health News, HHS spokesperson Andrew Nixon wrote, “ACIP exists to ensure that vaccine policy is guided by the best available evidence and open scientific deliberation. Any updates to recommendations will be made transparently with gold standard science.”

The draft agenda for the upcoming ACIP meeting was released to the public less than a week before it is scheduled to begin.

At the last ACIP meeting, in June, Martin Kulldorff, the chair and one of seven new members handpicked by Kennedy, questioned the need to vaccinate every newborn, citing only two of the many ways the virus can spread. Kulldorff is a former Harvard Medical School professor who became known for opposing some public health measures during the pandemic.

“Unless the mother is hepatitis B positive, an argument could be made to delay the vaccine for this infection, which is primarily spread by sexual activity and intravenous drug use,” he said.

The virus spreads via direct exposure to an infected bodily fluid like blood or semen. The disease has no cure and can lead to serious conditions like cirrhosis and liver cancer later in life. The CDC advisory panel may maintain the recommendation to inoculate newborns whose mothers have hepatitis B or are considered at high risk of the disease, the former officials said.

Protection From Birth

In 1991, federal health officials determined it was advisable for newborns to receive their first dose of the hepatitis B vaccine within 24 hours of birth, which blocks the virus from taking hold if transmitted during delivery. While parents may opt out of the shots, many day care centers and school districts require proof of hepatitis B vaccination for enrollment.

The prospect of ACIP’s altering the recommendation has left some people living with the virus deeply unsettled.

“I am goddamn frustrated,” said Wendy Lo, who has lived with the liver disease, likely since birth. Years of navigating the psychological, monetary, medical, and social aspects of chronic hepatitis B has touched almost every aspect of her life.

“I would not want anyone to have to experience that if it can be prevented,” she said. Lo learned she had the disease due to a routine screening to study abroad in college.

Lo credits the vaccines with protecting her close family members from infection.

“I shared with my partner, ‘If you get vaccinated, we can be together,’” she said. He got the vaccine, which protects him from infection, “so I’m grateful for that,” she said.

The CDC estimates half of people with hepatitis B do not know they are infected. It can range from an acute, mild infection to a chronic infection, often with few to no symptoms. Most people with chronic hepatitis B were born outside of the U.S., and Asians and Pacific Islanders followed by Black people have the highest rates of newly reported chronic infections.

When her children were born, Lo was adamant that they receive the newborn dose, a decision she says prevented them from contracting the virus.

The earlier an infection occurs, the worse the consequences, according to the CDC. When contracted in infancy or early childhood, hepatitis B is far more likely to become a chronic infection, silently damaging the liver over decades.

Those who become chronic carriers can also unknowingly spread the virus to others and face an increased risk of long-term complications including cirrhosis and liver cancer, which may not become evident until much later in life.

“Now I’m in my 50s, one of my big concerns is liver cancer. The vaccine is safe and effective, it’s lifesaving, and it protects you against cancer. How many vaccines do that?” Lo said.

Thirty Years of Universal Vaccination

Treatments like the antivirals Lo now takes weren’t available until the 1990s. Decades of the virus’s replicating unchecked damaged her liver. Every six months she gets scared of what her blood tests may reveal.

After a vaccine was approved in the 1980s, public health officials initially focused vaccination efforts on people thought to be at highest risk of infection.

“I, and every other doctor, had been trained in medical school to think of hepatitis B as an infection you acquired as an adult. It was the pimps, the prostitutes, the prisoners, and the health care practitioners who got hepatitis B infection. But we’ve learned so much more,” said William Schaffner, a professor of infectious diseases at the Vanderbilt University School of Medicine and a former voting member of ACIP.

As hepatitis B rates remained stubbornly high in the 1980s, scientists realized an entire vulnerable group was missing from the vaccination regime — newborns. The virus is often transmitted from an infected mother to baby in late pregnancy or during birth.

“We may soon hear, ‘Let’s just do a blood test on all pregnant women.’ We tried that. That doesn’t work perfectly either,” Schaffner said.

Some doctors didn’t test, he said, and some pregnant women falsely tested negative while others acquired hepatitis B after they had been tested earlier in their pregnancies.

In 1991, Schaffner was a liaison representative to ACIP when it voted to advise universal vaccination for hepatitis B before an infant leaves the hospital.

“We want no babies infected. Therefore, we’ll just vaccinate every mom and every baby at birth. Problem solved. It has been brilliantly successful in virtually eliminating hepatitis B in children,” he said.

In 1990, there were 3.03 cases of hepatitis B per 100,000 people 19 years old or under in the U.S., according to the CDC.

Since the federal recommendation to vaccinate all infants, cases have dramatically decreased. CDC data shows that in 2022 the rate among those 19 or under was less than 0.1 per 100,000.

While hepatitis B is often associated with high-risk behaviors such as injection drug use or having multiple sexual partners, health experts note that it is possible for the virus to be transmitted in ordinary situations too, including among young children.

The virus can survive for up to seven days outside the body. During that time, even microscopic traces of infected blood on a school desk or playground equipment can pose a risk. If the virus comes into contact with an open wound or the mucous membranes of the eyes, an infection can occur. This means that unvaccinated children not considered at high risk can still be exposed in everyday environments.

Future Access Uncertain

If the CDC significantly alters its recommendation, health insurers would no longer be required to cover the cost of the shots. That could leave parents to pay out-of-pocket for a vaccine that has long been provided at no charge. Children who get immunizations through the federal Vaccines for Children program would lose free access to the shot as soon as any new ACIP recommendations get approved by the acting CDC director.

The two former CDC officials said that plans were underway to push back the official recommendation for the vaccine as of August, when they both left the agency, but may have changed.

Schaffner is still an alternate liaison member of ACIP, and hopes to express his support for universal newborn vaccination at the next meeting.

“The liaisons have now been excluded from the vaccine work groups. They are still permitted to attend the full meetings,” he said.

Schaffner is worried about the next generation of babies and the doctors who care for them.

“We’ll see cases of hepatitis B once again occur. We’ll see transmission into the next generation,” he said, “and the next generation of people who wear white coats will have to deal with hepatitis B, when we could have cut it off at the pass.”

We’d like to speak with current and former personnel from the Department of Health and Human Services or its component agencies who believe the public should understand the impact of what’s happening within the federal health bureaucracy. Please message KFF Health News on Signal at (415) 519-8778 or get in touch here.

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Health and Human Services Secretary Robert F. Kennedy Jr., a longtime anti-vaccine activist, replaced the members of a federal vaccine advisory committee in June. The committee plays an important role in recommending vaccines, and its guidance influences the coverage decisions insurance companies make.

KFF Health News reporter Jackie Fortiér appeared on WAMU’s “Health Hub” on Aug. 27 to explain why confusion over federal immunization policy has left parents and pediatricians uncertain about future access to childhood immunizations, especially for those on Medicaid.

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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Health Care Helpline helps you navigate the hurdles between you and good health care. KFF Health News reporter Jackie Fortiér spoke with NPR’s Ari Shapiro about a Minnesota family facing big bills for their infant son’s hearing tests.

“My son was diagnosed with congenital CMV, a virus that can cause hearing loss. As part of this diagnosis, he will be required to have routine hearing tests every few months until he is 10 years old. I reached out to you because I wanted to know why my son’s hearing tests weren’t covered by our insurance and why we needed to pay for it.”

— Anna Deutscher, 29, from Minnesota, writing about her infant son, Beckham

Trying to figure out why her claim was denied took Anna Deutscher a lot of time and work.

Baby Beckham’s hearing screenings were preventive care, which is supposed to be covered by law. Every hearing test cost them about $350 out-of-pocket. Between those bills and Beckham’s other health costs, the family maxed out two credit cards.

“Everything just immediately goes right to trying to pay that debt off,” Deutscher said.

At times, she felt overwhelmed by her son’s medical needs, on top of working. Deutscher said she “didn’t know what else to do” when her insurance company kept saying no to her requests that it pay for the hearing tests.

No one wants to spend time fighting their health insurance company. Many people feel they don’t have the knowledge or stamina to do it. But if, like Deutscher, you’re denied for a preventive service, it may be worth it.

Here are a few tips — a slingshot and a few stones, so you can be David when facing a health care Goliath.

1. Check Your Policy

Read your plan documents to confirm whether the treatment or service is covered. Pay attention to any exclusions or limitations. Deutscher’s plan documents say hearing tests are not covered. But even when a sought-after benefit is excluded, that might not be the end of the line.

2. Is the Service Preventive?

Many types of preventive care are supposed to be covered without additional cost under the Affordable Care Act. If you receive a recommended preventive screening and have private insurance, including through the Affordable Care Act marketplace, there should be no copayment at the time of service, and you shouldn’t get a bill later. A small number of insurance plans are “grandfathered in,” which means you may not have the same rights and protections as the ACA provides. Check with your employer’s human resources benefits manager to find out for sure.

Here’s a list of preventive services health plans must cover and the list specific to children and young adults.

A physician recommended regular hearing screenings for the Deutschers’ baby, which the healthcare.gov list indicates should be considered preventive and covered by insurance. But JoAnn Volk, an insurance expert and a research professor at Georgetown University, said real life often doesn’t match what the law requires.

“It really does come down to everyone sort of being on their best behavior on the provider and plan side to truly interpret and follow what should be covered,” Volk said.

3. Peel Apart the Denial

If you’ve been denied coverage, you need to know why. Health insurance companies are required to explain every denial. The denial letter or your explanation of benefits should state the reason, which may be a coverage exclusion, incorrect coding, or a determination that the service was deemed not medically necessary. Follow up and ask for specific details about the denial and the criteria used, and request an explanation of benefits. Then use that information to build an appeal, being sure to address the reason for the denial.

4. File the Appeal

There are a few steps to know, but you don’t have to be a lawyer to figure them out. Usually there’s an appeal form to fill out. Visit your insurer’s website, check your explanation of benefits, or call your insurer and ask how to get started. The process typically includes writing a letter saying why you disagree with the denial. Include any medical records or test results that support your case and a copy of the federal guidelines that show the care is a covered, preventive service. If you can, ask your physician to write a letter explaining why the service is preventive and necessary.

Your insurance company has 30 to 60 days to respond, depending on your state and health plan. If your appeal is denied, try again. Some people win on the second go-round.

If your appeal is denied a second time, you can request an external medical review. That process is led by a medical professional who is supposed to make an unbiased decision. In California, for instance, many health plans fall under the jurisdiction of the Department of Managed Health Care.

“In 2023, 72% of health plan members that came to us and filed an independent medical review ended up getting the service that they requested,” said Mary Watanabe, who leads the department.

Keep deadlines in mind. How much time you have to file should be on your explanation of benefits. Your insurer is required by law to accept the external reviewer’s decision.

For more help starting an appeal or asking for an external review, visit healthcare.gov or your state insurance department.

5. Ask Human Resources for Help

If you get coverage through your job and you’re hitting roadblocks, consider emailing your human resources department. HR folks have contacts with the insurance companies you don’t and may save you a few calls to the 800 number on the back of your insurance card. Legally, HR is under no obligation to help, and covering a health service may not be in your employer’s financial interest. But sending HR the documents you prepared for the insurance appeal may prompt them to push the insurance company to take another look.

“The whole point of employers offering benefits is to attract and retain a solid workforce, right?” Volk said.

Making a case to HR may be a ramp toward getting the treatment or service covered the next time your company revises its health plan offerings, said Rhonda Buckholtz, a consultant who advises businesses on medical billing.

She said consumers can do a quick online search to see whether other large insurance companies in their area cover the health care service they need. That information can give you leverage, Buckholtz said.

Going to HR helped Deutscher. Eventually, her employer said it would cover the cost of hearing tests for baby Beckham for the current plan year. Deutscher’s employer has a self-funded plan, which gives companies the ability to customize benefits. It ultimately decided to add hearing tests as a standard benefit for all employees.

“It’s been like this constant cloud hanging over my head, so for that to suddenly be lifted, it didn’t feel real. I also have never gone to my HR for something like this before. I didn’t even know this was an option,” Deutscher said.

Health Care Helpline helps you navigate the health system hurdles between you and good care. Send us your tricky question and we may tap a policy sleuth to puzzle it out. Share your story. The crowdsourced project is a joint production of 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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