Author: bkellaway

President Donald Trump has nominated Robert F. Kennedy Jr., an environmental lawyer with no formal medical or public health expertise, as secretary of Health and Human Sciences. Two Senate committees will question Kennedy this week on how his disproven views of science and medicine qualify him to run the $1.7 trillion, 80,000-employee federal health system.

Here are four considerations for lawmakers on the Senate Finance and Senate Health, Education, Labor and Pensions committees, which will host Kennedy for questioning on Wednesday and Thursday, respectively:

1) Kennedy’s unconventional health claims.

For decades, Kennedy has advocated for health-related ideas that are scientifically disproven or controversial. He created and was paid hundreds of thousands of dollars by Children’s Health Defense, a group that champions the false idea that vaccines cause autism and other chronic diseases and has sued to take vaccines off the market. Kennedy has said covid vaccines are the deadliest in history, antidepressants lead children to commit mass shootings, environmental contaminants may cause people to become trans, and HIV is not the only cause of AIDS. He also pushes the use of products that regulators consider dangerous, such as raw milk, and for broader use of some medicines, such as ivermectin and hydroxychloroquine, to treat conditions without FDA approval. He says public health agencies oppose their use only because of regulatory capture by big drug and food interests.

“He believes you can avoid disease if you have a healthy immune system. He sees vaccines and antibiotics as toxins,” said Paul Offit, director of the Vaccine Education Center at Children’s Hospital of Philadelphia. Top Trump health nominees — Kennedy, Marty Makary for FDA commissioner, Jay Bhattacharya for National Institutes of Health director, and former U.S. Rep. Dave Weldon for Centers for Disease Control and Prevention director — are generally disdainful of the agencies they’ll be leading, Offit said.

“They think they are going to go into office, pull back the curtain, find all this bad stuff, and reveal it to the American public,” he said.

During a measles epidemic in 2019 and 2020 that killed 83 people, mostly children, in Samoa, Kennedy, as chairman of Children’s Health Defense, warned the country’s prime minister against measles vaccination. This behavior alone “is disqualifying” for an HHS nominee, said Georges Benjamin, executive director of the American Public Health Association.

Equally problematic, in Benjamin’s view, was Kennedy’s legal effort in 2021 to get the covid vaccine pulled from the market. “He can’t say he’s not anti-vax,” Benjamin said. “He wasn’t following the evidence.”

A Kennedy spokesperson did not respond to a request for comment.

2) Kennedy’s chances appear good, despite opposition.

Kennedy’s nomination has emerged in a moment when Trump is on a roll and mistrust of public health and medical authority in the wake of the pandemic has created an opening for people with unorthodox views of science to seize the reins of the country’s health system.

After former Fox News personality Pete Hegseth was confirmed as Defense secretary last week despite his controversial qualifications for the job and stark warnings from former top military brass, many Washington observers think RFK Jr. is going to be hard to defeat. In a meeting on the Hill with Democratic senators and their aides last week, Offit said, “the feeling was that he would likely be confirmed.”

Trump has demanded that Republican senators line up behind his nominees and has so far succeeded. It’s thought that Sens. Lisa Murkowski of Alaska and Susan Collins of Maine could oppose Kennedy, based on their opposition to Hegseth. Sen. Mitch McConnell (R-Ky.), the other Hegseth “nay” vote, is a polio survivor who has not spoken publicly about Kennedy but said in December that opposing “proven cures” was dangerous. Other senators whose Kennedy votes are said to be in question include Sen. Bill Cassidy (R-La.), the HELP Committee chair, a physician who gave a lukewarm response after meeting Kennedy.

Others have reported that Sens. Cory Booker (D-N.J.), who shares Kennedy’s concern with the spread of obesity and chronic illness, and Sheldon Whitehouse (D-R.I.), who attended law school with Kennedy, might vote for him. Neither senator’s office responded to a request for comment. Advancing American Freedom, a conservative advocacy group founded by former Vice President Mike Pence, has fought Kennedy’s nomination with a major ad buy.

3) The hearings are going to be heated.

Democratic senators are coming with plenty of ammunition. Sen. Elizabeth Warren (D-Mass.) sent Kennedy a 34-page letter containing 175 questions on everything from his anti-vaccine statements and actions to his waffling positions on abortion to his stances on Medicare, drug prices, and the cause of AIDS.

While public health and medical groups did not coordinate with Pence’s conservative organization, questions about Kennedy’s earlier stance in support of abortion rights could raise hackles on the GOP side of the aisle. Although his group is far from Pence on reproductive rights, Benjamin said, “if it helps derail him, I hope some senators are listening to Pence. Any shelter in a storm.”

“The hearings are going to be very difficult for him because he’s told a web of untruths as he’s marched across the offices,” said Leslie Dach, executive chair of Protect Our Care, a Democratic-aligned advocacy group.

Public opinion reflects leeriness of Kennedy on health, though not excessively. In a poll released Tuesday by KFF, 43% of respondents said they trusted him to make the right health recommendations. About 81% of Republicans in the poll said they trusted Kennedy — almost as many as trust their own doctor.

4) What happens if Kennedy takes office.

At the NIH, FDA, and other federal health agencies, nervous scientists speak of early retirement or jumping to industry should Kennedy and his agency heads take office.

The pharmaceutical industry has kept quiet on the nomination, as has the American Medical Association. Many patient advocacy groups are worried, but wary of creating friction with an administration they can’t ignore or defeat.

Kennedy’s comments on AIDS — suggesting that gay men’s use of stimulants, rather than the HIV virus, were its cause — are troubling to Carl Schmid, executive director of the HIV+Hepatitis Policy Institute. But “I don’t know if he’s going to get confirmed or not,” he said. “If he does, we look forward to working with him and educating him.”

At the J.P. Morgan Healthcare conference earlier this month, Emma Walmsley, CEO of GSK, a leading vaccine maker, said she’d “wait and see what the facts are” before predicting what Kennedy would do. Vaccines, she noted, are “not our biggest business.”

GSK is one of a handful of vaccine makers remaining on the U.S. market. That number could shrink further if the Trump administration and Congress undo a 1986 law that provided legal protection for vaccine makers — as Kennedy has advocated.

Just a few years ago, children with Type 1 diabetes reported to the school nurse several times a day to get a finger pricked to check whether their blood sugar was dangerously high or low.

The introduction of the continuous glucose monitor (CGM) made that unnecessary. The small device, typically attached to the arm, has a sensor under the skin that sends readings to an app on a phone or other wireless device. The app shows blood sugar levels at a glance and sounds an alarm when they move out of a normal range.

Blood sugar that’s too high could call for a dose of insulin — delivered by injection or the touch of a button on an insulin pump — to stave off potentially life-threatening complications including loss of consciousness, while a sip of juice could remedy blood sugar that’s too low, preventing problems such as dizziness and seizures.

Schools around the country say teachers listen for CGM alarms from students’ phones in the classroom. Yet many parents say that there’s no guarantee a teacher will hear an alarm in a busy classroom and that it falls to them to ensure their child is safe when out of a teacher’s earshot by monitoring the app themselves, though they may not be able to quickly contact their child.

Parents say school nurses or administrative staff should remotely monitor CGM apps, making sure someone is paying attention even when a student is outside the classroom — such as at recess, in a noisy lunchroom, or on a field trip.

But many schools have resisted, citing staff shortages and concerns about internet reliability and technical problems with the devices. About one-third of schools do not have a full-time nurse, according to a 2021 survey by the National Association of School Nurses, though other staffers can be trained to monitor CGMs.

Caring for children with Type 1 diabetes is nothing new for schools. Before CGMs, there was no alarm that signaled a problem; instead, it was caught with a time-consuming finger-prick test, or when the problem had progressed and the child showed symptoms of complications.

With the proliferation of insulin pumps, many kids can respond to problems themselves, reducing the need for schools to provide injections as well.

Parents say they are not asking schools to continuously monitor their child’s readings, but rather to ensure that an adult at the school checks that the child responds appropriately.

“People at the [school] district don’t understand the illness, and they don’t understand the urgency,” said Julie Calidonio of Lutz, Florida.

Calidonio’s son Luke, 12, uses a CGM but has received little support from his school, she said. Relying on school staff to hear the alarms led to instances in which no one was nearby to intervene if his blood sugar dropped to critical levels.

“Why have this technology that is meant to prevent harms, and we are not acting on it,” she said.

Corey Dierdorff, a spokesperson for the Pasco County School District, where Luke attends school, said in a statement to KFF Health News that staff members react when they hear a student’s CGM sound an alert. Asked why the district won’t agree to have staff remotely monitor the alarms, he noted concerns about internet reliability.

In September, Calidonio filed a complaint with the U.S. Justice Department against the district, saying its inability to monitor the devices violates the Americans with Disabilities Act, which requires schools to make accommodations for students with diabetes, among other conditions. She is still awaiting a decision.

The complaint comes about four years after the Connecticut U.S. attorney’s office determined that having school staffers monitor a student’s CGM was a “reasonable accommodation” under the ADA. That determination was made after four students filed complaints against four Connecticut school districts.

“We fought this fight and won this fight,” said Jonathan Chappell, one of two attorneys who filed the complaints in Connecticut. But the decision has yet to affect students outside the state, he said.

Chappell and Bonnie Roswig, an attorney and director of the nonprofit Center for Children’s Advocacy Disability Rights Project, both said they have heard from parents in 40 states having trouble getting their children’s CGMs remotely monitored in school. Parents in 10 states have filed similar complaints, they said.

CGMs today are used by most of the estimated 300,000 people in the U.S. with Type 1 diabetes under age 20, health experts say. Also known as juvenile diabetes, it is an autoimmune disease typically diagnosed in early childhood and treated with daily insulin to help regulate blood sugar. It affects about 1 in 400 people under 20, according to the American Academy of Pediatrics.

(CGMs are also used by those with Type 2 diabetes, a different disease tied to risk factors such as diet and exercise that affects tens of millions of people — including a growing number of children, though it is usually not diagnosed until the early teens. Most people with Type 2 diabetes do not take insulin.)

Students with diabetes or another disease or disability typically have a health care plan, developed by their doctor, that works with a school-approved plan to get the support they need. It details necessary accommodations to attend school, such as allowing a child to eat in class or ensuring staff members are trained to check blood glucose or give a shot of insulin.

For children with Type 1 diabetes, the plan usually includes monitoring CGMs several times a day and responding to alarms, Roswig said.

Lynn Nelson, president-elect of the National Association of School Nurses, said when doctors and parents deem a student needs their CGM remotely monitored, the school is obligated under the ADA to meet that need. “It is legally required and the right thing to do.”

Nelson, who also manages school nurse programs in Washington state, said schools often must balance the students’ needs with having enough administrative staff.

“There are real workforce challenges, but that means schools have to go above and beyond for an individual student,” she said.

Henry Rodriguez, a pediatric endocrinologist at the University of South Florida and a spokesperson for the American Diabetes Association, said remote monitoring can be challenging for schools. While they advocate for giving every child what they need to manage their diabetes at school, he said, schools can be limited by a lack of support staff, including nurses.

The association last year updated its policy around CGMs, stating: “School districts should remove barriers to remote monitoring by school nurses or trained school staff if this is medically necessary for the student.”

In San Diego, Taylor Inman, a pediatric pulmonologist, said her daughter, Ruby, 8, received little help from her public school after being diagnosed with Type 1 diabetes and starting to use a CGM.

She said alerts from Ruby’s phone often went unheard outside the classroom, and she could not always reach someone at the school to make sure Ruby was reacting when her blood sugar levels moved into the abnormal range.

“We kept asking for the school to follow my daughter’s CGM and were told they were not allowed to,” she said.

In a 2020 memo to school nurses that remains in effect, Howard Taras, the San Diego Unified School District’s medical adviser, said if a student’s doctor recommends remote monitoring, it should be done by their parents or doctor’s office staff.

CGM alarms can be “disruptive to the student’s education, to classmates and to staff members with other responsibilities,” Taras wrote.

“Alarms are closely monitored, even those that occur outside of the classroom,” Susan Barndollar, the district’s executive director of nursing and wellness, said in a statement. Trained adults, including teachers and aides, listen for the alarms when in class, at recess, at gym class, or during a field trip, she said.

She said the problem with remote monitoring is that staff in the school office doing the monitoring may not know where the student is to tend to them quickly.

Inman said last year they paid $20,000 for a diabetes support dog trained to detect high or low blood sugar and later transferred Ruby to a private school that remotely tracks her CGM.

“Her blood sugar is better controlled, and she is not scared and stressed anymore and can focus on learning,” she said. “She is happy to go to school and is thriving.”

Some schools have changed their policies. For more than a year, several parents lobbied Loudoun County Public Schools in Northern Virginia to have school nurses follow CGM alerts from their own wireless devices.

The district board approved the change, which took effect in August and affects about 100 of the district’s more than 80,000 students.

Before, Lauren Valentine would get alerts from 8-year-old son Leo’s CGM and call the school he attends in Loudoun County, not knowing if anyone was taking action. Valentine said the school nurse now tracks Leo’s blood sugar from an iPad in the clinic.

“It takes the responsibility off my son and the pressure off the teacher,” she said. “And it gives us peace of mind that the school clinic nurses know what is happening.”

This article was produced by KFF Health News, 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. 

Every year, a health care think tank called the Lown Institute ranks the 10 worst examples of “profiteering and dysfunction” in health care and “honors” the winners.

The “Shkreli Awards” are a kind of Oscars for the most outrageous examples of greed, fraud, and general brokenness in American health care.

The awards are named after Martin Shkreli, a former pharmaceutical executive who infamously raised the price of Daraprim, a lifesaving treatment for toxoplasmosis, from around $13 a pill to $750. The media dubbed him “the pharma bro,” and he became a symbol of brazen pharmaceutical greed.

In this episode of “An Arm and a Leg,” you’ll hear highlights from this year’s ceremony and reflections from the Lown Institute’s president, Vikas Saini.

“Showing all these stories together paints a picture of a health care system in desperate need of transformation,” Saini said at the event. “Not just because the stories are shocking, but because often what they’re depicting, like Martin Shkreli’s infamous price hike, is perfectly legal.”

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

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

To hear all KFF Health News podcasts, click here.

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

This article was produced by KFF Health News, 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. 

Hace apenas unos años, los niños con diabetes tipo 1 iban a la enfermería de la escuela varias veces al día para que les pincharan un dedo y ver si su nivel de azúcar en sangre era peligrosamente alto o bajo.

La llegada del monitor continuo de glucosa (MCG) hizo que eso ya no fuera necesario. El pequeño dispositivo, que normalmente se coloca en el brazo, tiene un sensor bajo la piel que envía lecturas a una aplicación en un teléfono u otro dispositivo inalámbrico. La aplicación muestra los niveles de azúcar en sangre en un instante, y emite una alarma cuando están fuera del rango normal.

Un nivel de azúcar en sangre demasiado alto podría requerir una dosis de insulina —con una inyección o solo tocando un botón en una bomba de insulina— para evitar complicaciones potencialmente mortales, como la pérdida del conocimiento. Un sorbo de jugo podría solucionar un nivel muy bajo de azúcar en sangre, previniendo problemas como mareos y convulsiones.

En las escuelas, los maestros están atentos a las alarmas de los MCG de los teléfonos de los alumnos. Sin embargo, muchos dicen que no hay garantía de que un maestro escuche una alarma en un aula ruidosa, y que les corresponde a ellos como padres garantizar la seguridad de sus hijos, supervisando ellos mismos la aplicación, aunque no puedan ponerse en contacto rápidamente.

Los padres dicen que las enfermeras escolares y el personal administrativo deberían supervisar de forma remota las aplicaciones de MCG, asegurándose de que alguien esté atento incluso cuando el estudiante esté fuera del aula, en el recreo, en un comedor ruidoso o en una excursión.

Pero muchas escuelas se han resistido, argumentando escasez de personal y preocupación por la fiabilidad de internet y los problemas técnicos con los dispositivos.

“La gente del distrito [escolar] no entiende la enfermedad, y no entiende la urgencia”, dijo Julie Calidonio, de Lutz, Florida.

El hijo de Calidonio, Luke, de 12 años, usa un MCG, pero ha recibido poco apoyo de su escuela, según la madre: nadie escuchaba la alarma o intervenía si su nivel de azúcar en sangre bajaba a niveles críticos.

“¿Por qué tenemos esta tecnología que está diseñada para prevenir daños y no la utilizamos?”, preguntó.

Corey Dierdorff, vocera del Distrito Escolar del condado de Pasco, donde Luke va a la escuela, dijo a KFF Health News que el personal reacciona cuando escuchan que el MCG de un estudiante emite una alerta. Cuando se le preguntó por qué el distrito no acepta que el personal supervise las alarmas de forma remota, dijo que duda de la eficacia de internet.

En septiembre, Calidonio presentó una denuncia ante el Departamento de Justicia contra el distrito, alegando que su incapacidad para supervisar los dispositivos viola la Ley de Estadounidenses con Discapacidades (ADA), que exige a las escuelas adaptarse para ayudar a los estudiantes que viven con diabetes, entre otras afecciones. Todavía está a la espera de una decisión.

La denuncia ocurrió unos cuatro años después que la fiscalía federal de Connecticut determinara que supervisar el MCG de un alumno en la escuela era una “adaptación razonable” bajo ADA. Esa determinación se tomó después que cuatro estudiantes presentaran denuncias contra cuatro distritos escolares de Connecticut.

“Luchamos y ganamos esta batalla”, dijo Jonathan Chappell, uno de los dos abogados que presentaron las denuncias en Connecticut. Pero la decisión aún no ha impactado en estudiantes en otros estados, agregó.

Chappell y Bonnie Roswig, abogada y directora de la organización sin fines de lucro Center for Children’s Advocacy Disability Rights Project, explicaron que han escuchado de padres en 40 estados que tienen problemas para que las escuelas monitoreen de manera remota los MCG de sus hijos.

Expertos en salud afirman que, en la actualidad, la mayoría de las aproximadamente 300.000 personas menores de 20 años con diabetes tipo 1 en Estados Unidos utilizan MCG. También conocida como diabetes juvenil, es una enfermedad autoinmune que suele diagnosticarse en la primera infancia y que se trata con insulina diaria para ayudar a regular el azúcar en sangre.

(Los MCG también se utilizan en casos de diabetes tipo 2, una afección diferente vinculada a factores de riesgo como la dieta y el ejercicio que afecta a millones de personas, incluyendo un número creciente de niños, aunque por lo general no se diagnostica hasta principios de la adolescencia. La mayoría de las personas con diabetes tipo 2 no utilizan insulina).

Los estudiantes que viven con diabetes, u otra afección o discapacidad, suelen tener un plan de salud desarrollado por su médico, que funciona con otro aprobado por la escuela para tener el apoyo que necesitan. Detalla adaptaciones necesarias, como permitir que un niño coma en el aula o asegurarse que el personal esté capacitado para controlar la glucosa o administrar una inyección de insulina.

Para los niños con diabetes tipo 1, el plan suele incluir monitorear los MCG varias veces al día y responder a las alarmas, indicó Roswig.

Lynn Nelson, presidenta electa de la National Association of School Nurses, dijo que cuando los médicos y los padres consideran que un estudiante necesita que su MCG sea monitoreado de forma remota, la escuela está obligada, bajo ADA, a satisfacer esa necesidad. “Es un requisito legal y es lo correcto”.

Nelson, que también gestiona programas de enfermería escolar en el estado de Washington, señaló que las escuelas a menudo deben equilibrar las necesidades de los estudiantes con la disponibilidad de personal.

“Hay verdaderos desafíos en materia de personal, pero eso significa que las escuelas tienen que hacer todo lo posible, y más, por ayudar a cada estudiante”, afirmó.

Henry Rodríguez, endocrinólogo pediátrico de la Universidad del Sur de Florida y vocero de la American Diabetes Association, dijo que este monitoreo puede ser un reto para las escuelas. Aunque abogan para que cada niño reciba lo que necesita para controlar su diabetes en la escuela, según Rodríguez, las escuelas pueden verse limitadas por la falta de personal de apoyo, incluidas enfermeras.

El año pasado, la asociación actualizó su política sobre los MCG estableciendo que “los distritos escolares deben eliminar las barreras para que las enfermeras escolares o el personal escolar capacitado monitoree los MCG de manera remota, si esto es médicamente necesario para el estudiante”.

En San Diego, Taylor Inman, neumonóloga infantil, dijo que su hija Ruby, de 8 años, recibió poca ayuda de su escuela pública después que le diagnosticaran diabetes tipo 1 y empezara a usar uno de estos dispositivos.

Contó que las alertas del teléfono de Ruby a menudo no se escuchaban fuera del aula, y que no siempre podía comunicarse con alguien para asegurarse de que Ruby reaccionaba cuando sus niveles de azúcar en sangre se volvían anormales.

“Seguimos pidiendo a la escuela que siguiera el MCG de mi hija y nos dijeron que no estaban autorizados a hacerlo”, afirmó.

En un memorando de 2020 enviado a las enfermeras escolares, que sigue vigente, Howard Taras, asesor médico del Distrito Escolar Unificado de San Diego, comunicó que si el médico de un estudiante recomienda el monitoreo remoto, debe hacerlo un padre o personal del consultorio del médico.

Las alarmas del MCG pueden ser “perturbadoras para la educación del estudiante, para los compañeros de clase y para los miembros del personal con otras responsabilidades”, escribió Taras.

Susan Barndollar, directora ejecutiva de enfermería y bienestar del distrito aseguró en un comunicado que el problema con la supervisión remota es que el personal de la oficina de la escuela que la realiza puede no saber dónde está el estudiante para asistirlo rápidamente.

Inman dijo que el año pasado pagaron $20.000 por un perro de apoyo para la diabetes entrenado para detectar niveles altos o bajos de azúcar en sangre y luego transfirieron a Ruby a una escuela privada que rastrea de forma remota su MCG.

“Su nivel de azúcar en sangre está mejor controlado, ya no está asustada ni estresada y puede concentrarse en aprender”, dijo Inman. “Está feliz de ir a la escuela y está progresando mucho”.

Algunas escuelas han cambiado sus políticas. Durante más de un año, varios padres presionaron a las escuelas públicas del condado de Loudoun, en el norte de Virginia, para que las enfermeras escolares siguieran las alertas del MCG desde sus propios dispositivos inalámbricos.

La junta del distrito aprobó el cambio, que entró en vigencia en agosto y afecta a cerca de 100 de los más de 80.000 estudiantes del distrito.

Antes, Lauren Valentine recibía alertas del MCG de su hijo Leo, de 8 años, y llamaba su escuela, en el condado de Loudoun, sin saber si alguien estaba tomando medidas. Valentine dijo que la enfermera del colegio ahora controla el azúcar en sangre de Leo desde un iPad en la clínica.

“Le quita la responsabilidad a mi hijo y la presión al maestro”, afirmó. “Y nos da tranquilidad que las enfermeras de la clínica escolar sepan lo que está pasando”.

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.