The Trump administration quietly restored federal family planning money to Tennessee and Oklahoma, despite court rulings that the states weren’t entitled to funds because they refused to provide women information about terminating pregnancies or abortion referrals on request.

The decision by the Department of Health and Human Services to restore millions of dollars for the two states came as it simultaneously withheld nearly $66 million from clinics in the Title X program elsewhere. Title X for more than 50 years has provided sexual and reproductive health services especially to low-income, hard-to-reach people, including minors.

The Biden administration in 2023 cut off funding to Tennessee and Oklahoma, saying they violated federal rules by not offering counseling to patients about abortion. The states sued federal health officials. And courts ruled against the states.

On March 31, HHS restored $3.1 million in family planning funds for the Tennessee Department of Health and nearly $2 million for the Oklahoma State Department of Health, according to court filings. In the notices, HHS said family planning funds were sent to the two states “pursuant to a settlement agreement with the recipient.”

Yet “there has been no agreement with Tennessee to settle this litigation,” Department of Justice lawyers wrote in an April 23 court filing.

Zach West, an official with the Office of the Oklahoma Attorney General, separately wrote on April 17 that the state’s grant notice “wrongly indicated that a settlement agreement had been reached. No agreement has yet been entertained or discussed in any substantial manner in this case.”

“To our knowledge no settlement has been reached between the State of Oklahoma and HHS in the pending litigation,” Erica Rankin-Riley, public information officer for the Oklahoma State Department of Health, said in an email in response to questions. She said the state’s Title X clinics are not providing referrals for abortion or counseling pregnant women about terminating pregnancies.

“We are appreciative of all that has been involved in restoring Oklahoma’s long-standing and successful Title X grant,” Rankin-Riley said, “and look forward to continuing these important services throughout the state as we have done for over 50 years.”

Spokespeople for HHS and the Tennessee Department of Health did not respond to requests for comment.

Title X was established to reduce unintended pregnancies and provide related preventive health care. As of 2023, more than 3,800 clinics across the country used federal grants to supply free or low-cost contraception, testing for sexually transmitted infections, screening for breast and cervical cancer, and pregnancy-related counseling.

Nationwide, more than 4 in 5 people who use Title X’s services are women, according to HHS.

Federal law prohibits clinics from using Title X money to pay for abortions. However, HHS regulations issued in 2021 say participating clinics must offer pregnant women information about prenatal care and delivery, infant care, foster care, adoption, and pregnancy termination. That includes counseling patients about abortion and providing abortion referrals on request.

HHS under President Donald Trump has not yet revised the Biden-era regulations, which means participating clinics are still required to provide abortion counseling and abortion referrals for pregnant women who request them.

After the Supreme Court’s June 2022 decision in Dobbs v. Jackson Women’s Health Organization, which ended the constitutional right to an abortion, Tennessee and Oklahoma enacted strict abortion bans with few exceptions. The states told their Title X clinics they could discuss or make referrals only for services that were legal in their states, effectively cutting off any talk about abortion.

“Continued funding is not in the best interest of the government,” two HHS officials wrote to Tennessee officials on March 20, 2023.

Tennessee and Oklahoma subsequently sued in federal court. A three-judge panel for the U.S. Court of Appeals for the 6th Circuit ruled against Tennessee, while Oklahoma asked the Supreme Court to review the case after that state lost in the U.S. Court of Appeals for the 10th Circuit.

State officials suggested even they weren’t sure why they got some of their funding back before the lawsuits were resolved. “If Oklahoma’s award is not being restored pursuant to a settlement agreement, then what is the reason for the partial restoration, and is it permanent?” West wrote.

“Tennessee has not yet ascertained the formal position of HHS with respect to whether HHS intends to fully restore Tennessee’s Title X funding,” Whitney Hermandorfer of the Office of the Tennessee Attorney General wrote in an April 7 letter.

A report from HHS’ Office of Population Affairs said 60% of roughly 2.8 million patients who received Title X services in 2023 had family incomes at or below the poverty line. Twenty-seven percent were uninsured, more than three times the national uninsured rate.

In fiscal 2024, the federal government awarded Title X grants to nearly 90 entities, a mix of state and local governments and private organizations. Those grantees distribute funds to public or private clinics.

The decision to restore some of Tennessee and Oklahoma’s funding diverges sharply from the approach HHS under Trump has taken with other Title X participants.

On March 31, HHS withheld family planning funds from 16 entities, including nine Planned Parenthood affiliates.

At least seven states — California, Hawaii, Maine, Mississippi, Missouri, Montana, and Utah — now do not have any Title X-funded family planning services, according to a lawsuit filed in federal court by the ACLU and the National Family Planning and Reproductive Health Association, which lobbies for Title X clinics.

Overall, 865 family planning clinics are unable to provide services to roughly 842,000 people, the lawsuit states.

“We know what happens when health care providers cannot use Title X funding: People across the country suffer, cancers go undetected, access to birth control is severely reduced, and the nation’s STI crisis worsens,” Alexis McGill Johnson, president and CEO of Planned Parenthood Action Fund, said in a statement.

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Carmen Aiken of Chicago made an appointment for an annual physical exam in July 2023, planning to get checked out and complete some blood work.

The appointment was at a family medicine practice run by University of Illinois Health. Aiken said the doctor recommended they undergo a Pap smear, which they hadn’t had in more than a year, and testing for sexually transmitted infections. Aiken, who works for a nonprofit and uses the pronoun they, said they were also encouraged to get the HPV vaccine.

They’d tested positive for HPV in 2019 and eventually cleared the virus but had not received the vaccine to prevent future infections.

“Sounds like a good idea,” Aiken, 37, recalled telling the doctor.

They also needed some lab work done, part of routine monitoring for one prescription. After being examined, Aiken said, they were directed to a different part of the office building to get blood drawn and receive the first dose of the vaccine before leaving.

Then the bill came.

The Medical Procedure

Services at Aiken’s appointment included a pelvic exam, a vaccination, and blood work, checking, in part, glucose levels and liver function.

An annual physical exam typically includes a variety of services, many of which insurers are required to cover under the Affordable Care Act, such as reviewing the patient’s health history, screening for high cholesterol, or performing a Pap smear, a procedure to check the cervix for signs of cancer.

Updating immunizations is also a common, covered service at checkups. The vaccine for HPV, or the human papillomavirus, provides protection against an infection that can cause several types of cancer. Federal health officials recommend being immunized for HPV at age 11 or 12, though the vaccine also can be administered later in life.

The Final Bill

$1,430.13: $1,223.22 for lab services and pathology, plus $206.91 for “professional services,” which included a charge for a 40-minute “High Mdm” outpatient visit — indicating a high level of “medical decision-making” — as well as charges for immunization administration and vaccines.

The Billing Problem: Diagnostic Blood Work With a Hospital Price Tag

Not all services that may be provided as part of an annual physical are paid for by insurance as preventive care.

A patient who needs blood work for a specific medical concern — as Aiken did, for medication monitoring — could be required to pay part of the bill. That’s the case even if the blood work is performed during a checkup alongside preventive services. Some health insurers pay for standard blood work as part of a preventive visit, but that’s not always the case.

Aiken had purchased a health insurance plan on the federal marketplace and said they were confident the visit would be covered at no cost to them.

When they got a bill for more than $1,400, Aiken thought, “How did this happen?” They said they called their insurer, BlueCross BlueShield of Illinois, then filed an appeal for the $1,223.22 amount they owed for lab services after their initial inquiry went nowhere. “Surely this is a misunderstanding.”

But their insurer sided with UI Health’s position that the blood work rendered during the appointment was not preventive. In a letter denying Aiken’s appeal, BlueCross BlueShield of Illinois decided that “the labs were billed correctly as diagnostic.”

Under the plan’s parameters, the insurer determined Aiken remained on the hook for 50% of the cost of outpatient labs performed in a hospital setting.

Dave Van de Walle, a spokesperson for BlueCross BlueShield of Illinois, would not discuss Aiken’s bill with KFF Health News.

Francesca Sacco, a spokesperson for UI Health, said in an emailed statement that Aiken scheduled the appointment for “medication monitoring and to obtain a vaccine.”

“Medication monitoring is not considered a wellness benefit under the Affordable Care Act,” she said.

Sacco also said Aiken’s labs were sent for processing to University of Illinois Hospital, more than a mile away from the family medicine practice.

That left Aiken owing more. Hospitals typically charge much more than physicians’ offices or independent commercial labs for the same tests.

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More from Bill of the Month

The distinction between a preventive visit and a diagnostic one is important for billing purposes: It dictates who’s on the hook for the bill. A preventive visit generally comes at no cost to patients. But a visit for an ongoing medical issue is usually classified as diagnostic, leaving the patient subject to copays and deductibles — or even charged for two separate appointments.

Patients may not notice a difference in the exam room. Much of that nuance is determined by the medical provider and captured on the bill.

Confusion still persists 15 years after the ACA’s preventive services protections took effect, said Sabrina Corlette, a founder and co-director of the Center on Health Insurance Reforms at Georgetown University.

“This is an outrageous bill for what should have been routine care,” Corlette said. “People just don’t have this kind of money lying around.”

The Resolution

After the insurer denied their appeal, they “fell down a hole into despair about it for a while,” Aiken said.

“And then someone really wise was like, ‘You can pay it and then just stop thinking about it.’”

So that’s what Aiken did: “I put it on my credit card.”

UI Health’s Sacco said the hospital system is committed to working with insurers to resolve cost-sharing disputes.

“However, it is the insurance company’s sole discretion whether a service is fully covered or subject to cost sharing,” she said. “In this case, the insurer determined that cost sharing would be applicable to a specific portion of the services provided to the patient. Based on this determination, the patient was billed accordingly by UI Health.”

The experience left its mark on Aiken. Last year, they said, they walked out of an urgent-care visit after a doctor recommended a Pap smear — fearing they’d incur another large bill.

The Takeaway

Delaying or avoiding care can lead to worse outcomes, which is why lawmakers tried to ensure patients generally would pay nothing for preventive services, such as immunizations, under the ACA.

Annual checkups are a key element of preventive care. For instance, most adults who never received the HPV vaccine do not know they are still eligible, so it’s critical to inform them of their options, said Verda Hicks, a gynecologic oncologist based in Kansas City, Missouri.

The vaccine offers protection against nine types of HPV, she said. It also prevents HPV-related cancers in men, so the Centers for Disease Control and Prevention recommends boys receive the immunization, too.

“Get vaccinated,” Hicks said. “We just do not have the same tools for many other cancers.”

Keep in mind that your coverage may vary — some insurance companies won’t cover the cost of the vaccine for some older patients — and the same services may be subject to different cost-sharing rules depending on whether they are conducted for prevention versus diagnosis.

Also, prices can vary depending on where care is delivered and tests are performed. If you need a blood test, ask that your doctor send the requisition to a commercial, in-network lab. Patients may not realize that labs drawn at a clinic may be sent to a hospital for testing, exposing them to greater costs.

There has been a push in Congress to eliminate this price variation through “site-neutral” payment policies. Regardless of location, the price for routine care would be reimbursed at the same amount.

“Site-neutral reforms could potentially have significantly reduced Carmen’s expenses,” said Christine Monahan, an assistant research professor at Georgetown’s Center on Health Insurance Reforms.

Meanwhile, a case before the Supreme Court could upend the health system by eliminating the requirement that insurers cover preventive services like vaccines and annual screenings at no cost to patients. The high court heard oral arguments April 21.

If the justices side with the plaintiffs this term, Georgetown’s Corlette said, “then we all potentially lose access to free, high-value preventive care, and that would be a real shame.”

Bill of the Month is a crowdsourced investigation by KFF Health News and The Washington Post’s Well+Being that dissects and explains medical bills. Since 2018, this series has helped many patients and readers get their medical bills reduced, and it has been cited in statehouses, at the U.S. Capitol, and at the White House. Do you have a confusing or outrageous medical bill you want to share? Tell us about it!

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When a woman collapsed on an escalator at the Buffalo, New York, airport last June, Phil Clough knew what to do. He and another bystander put her flat on her back and checked her pulse (faint) and her breathing (shallow and erratic). Then she stopped breathing altogether. Realizing that she might be having a cardiac arrest, Clough immediately started doing chest compressions, pressing hard and quickly on the center of her chest, while others nearby called 911 and ran to get an automated external defibrillator. Within seconds of receiving a shock from the AED, the woman opened her eyes. By the time the airport rescue team arrived a few minutes later, she was conscious and able to talk with rescuers.

“I don’t want to ever feel helpless,” said Clough, who had flown to Buffalo that evening on a work trip for his engineering job in Denver. After an incident several years earlier in which he was unsure how to help a woman who collapsed at his gym, he took a college course to get certified as an emergency medical responder, who can provide basic life support interventions.

The woman who collapsed was lucky: She lost consciousness in a public place where bystanders knew how to help her. Most people aren’t so fortunate. In the United States, a lack of training and readiness to deal with this relatively common medical emergency contributes to thousands of deaths a year.

More than 350,000 cardiac arrests occur outside of a hospital setting in the United States annually, according to the American Heart Association. In 9 of 10 cases, the person dies because help doesn’t arrive quickly enough. Every minute that passes without intervention reduces the odds of survival by 10%. But if someone immediately receives cardiopulmonary resuscitation and an AED shock, if needed, their survival odds can double or even triple.

Fewer than half of people get that immediate help, according to the heart association. A cardiac arrest occurs when the heart stops suddenly, often because the heart’s electrical system malfunctions. About 70% of cardiac arrests occur at home. But even if someone collapses in a public place and an ambulance is called immediately, it takes roughly eight minutes, on average, for emergency personnel to arrive. In rural areas it can take much longer.

When someone has a cardiac arrest, they often require an electric shock from an AED to get their heart started again. These portable devices analyze the heart’s rhythm and instruct the user to deliver a shock, if necessary, through pads placed on the victim’s chest.

But although many states require that AEDs be available in public places such as airports, malls, and schools, they often aren’t easy to spot. A study of data from 2019 to 2022 found that after a cardiac arrest in a public place, bystanders used an AED 7% of the time and performed CPR 42% of the time.

The most comprehensive resource for identifying AEDs is a nonprofit foundation called PulsePoint, which has registered 185,000 AEDs in 5,400 communities in the United States, according to Shannon Smith, vice president of communications at PulsePoint. If requested, the organization will help a community build its AED registry and connect it to the area’s 911 service free of charge.

PulsePoint recently launched a national AED registry to further this effort.

Through a companion app, users trained in CPR can volunteer to be alerted to potential cardiac arrests within roughly a quarter-mile when calls come into a community’s emergency response dispatch service. The app also identifies registered AEDs nearby.

“PulsePoint is the closest thing we have to a national registry,” said Elijah White, president of the acute care technology division at Zoll, a leading AED manufacturer. The company has provided location information for all its AEDs to PulsePoint. Still, PulsePoint has registered only a fraction of AEDs in the country. “It’s just a start,” White said.

Other factors may also keep bystanders from stepping in to help. They may lack CPR training or confidence, or fear liability if something goes wrong.

Liability shouldn’t be a concern, in general. All 50 states and Washington, D.C., have “good Samaritan” laws that protect bystanders from legal liability if they intervene in a medical emergency in good faith.

But training can be a serious barrier. One study found that only 18% of people reported that they’d received CPR training within the previous two years, a key time frame for skills maintenance. Two-thirds of people reported having been trained at some point.

One way to boost training is to make it mandatory, and many states require that students receive CPR training to graduate. But even though 86% of high school students reported having received some training, only 58% said they knew how to apply their skills, and a similar proportion said they knew how to use an AED.

“We’ve got some work to do,” said Dianne Atkins, a pediatric cardiologist and longtime AHA volunteer, who said ensuring high school training is a top priority for the AHA.

Other countries have prioritized training their residents in AED use and CPR for many years, with some success.

In Denmark, such training has been required to get a driver’s license since the 2000s, and middle schoolers are also required to be trained. And in a survey, 45% of the population reported having received training through their workplace. In the study, 81% of respondents in the general public reported having been trained in CPR and 54% in how to use an AED.

Norway has provided first-aid training in primary schools since 1961 and mandates CPR training to receive a driver’s license. Ninety percent of the population reported they are trained in CPR.

In the United States,  many training courses are available, online and in person, that take only a few hours to complete. For someone who’s never learned basic life-support skills, the training can be eye-opening. This previously untrained reporter was taken aback to discover how forcefully and rapidly someone must press on a mannequin’s chest to do CPR correctly: 100 to 120 compressions a minute to a depth of at least 2 inches.

The most important thing is for ordinary people to know the basics well enough that “they would feel confident to call 911 and push hard and fast on someone’s chest,” said Audrey Blewer, an assistant professor of family medicine and community health at Duke University School of Medicine who has published numerous studies on bystander CPR and AED use. “That doesn’t require a certification card and recent training.”

During an emergency, 911 dispatchers can also play a crucial role in walking people through doing CPR and operating an AED, said David Hiltz, volunteer program director of the HeartSafe Communities program at the Citizen CPR Foundation, a nonprofit that works to improve cardiac arrest survival through training and education.

Phil Clough has stayed in touch with Rebecca Sada, the woman who collapsed at the Buffalo airport that June day as she was coming home from a trip to visit her daughter. Sada, who had no history of heart trouble before her cardiac arrest, now has an automated defibrillator implanted in her chest to stabilize a previously undiagnosed electrical problem with her heart. She and her husband have had Clough over for dinner, and they are friends for life, she said.

One other change that occurred as a result of Sada’s cardiac arrest: She and her husband got certified in CPR and AED.

“Now, if we needed to help someone down the road, we’d be able to,” Sada said.

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

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Cuando una mujer se desplomó en una escalera mecánica en el aeropuerto de Buffalo, en Nueva York, el pasado junio, Phil Clough supo qué hacer.

Él y otro transeúnte la colocaron boca arriba y le revisaron el pulso (débil) y la respiración (superficial y errática). Luego dejó de respirar por completo. Al darse cuenta de que podría estar sufriendo un paro cardíaco, Clough comenzó de inmediato a realizar compresiones torácicas, presionando con fuerza y ​​rapidez en el centro del pecho, mientras otras personas llamaban al 911 y corrían a buscar un desfibrilador externo automático (DEA).

A los pocos segundos de recibir la descarga del DEA, la mujer abrió los ojos. Para cuando llegó el equipo de rescate del aeropuerto, unos minutos después, estaba consciente y podía hablar con los rescatistas.

“No quiero sentirme indefenso nunca”, dijo Clough, quien había volado a Buffalo esa noche en un viaje de trabajo por su puesto de ingeniería en Denver. Tras un incidente varios años antes, en el que no estaba seguro de cómo ayudar a una mujer que se desplomó en su gimnasio, realizó un curso universitario para certificarse como socorrista médico de emergencia, que puede brindar intervenciones de soporte vital básico.

La mujer que se desplomó tuvo suerte: perdió el conocimiento en un lugar público donde los transeúntes supieron cómo ayudarla. La mayoría de las personas no tienen tanta suerte. En Estados Unidos, la falta de capacitación y preparación para abordar esta emergencia médica relativamente común contribuye a miles de muertes al año.

Según la Asociación Americana del Corazón (AHA), en Estados Unidos ocurren más de 350.000 paros cardíacos cada año fuera del ámbito hospitalario. En 9 de cada 10 casos, la persona muere porque la ayuda no llega con la suficiente rapidez.

Cada minuto que se pasa sin intervención reduce las probabilidades de supervivencia en un 10%. Pero si alguien recibe inmediatamente reanimación cardiopulmonar y una descarga de DEA, si es necesario, sus probabilidades de supervivencia pueden duplicarse o incluso triplicarse.

Según la asociación del corazón, menos de la mitad de las personas reciben esa ayuda inmediata. Un paro cardíaco ocurre cuando el corazón se detiene repentinamente, generalmente debido a un mal funcionamiento del sistema eléctrico cardíaco.

Alrededor del 70% de los paros cardíacos ocurren en el hogar. Pero incluso si alguien se desmaya en un lugar público y se llama a una ambulancia al instante, el personal de emergencia tarda unos ocho minutos, en promedio, en llegar. En zonas rurales, puede tardar mucho más.

Cuando alguien sufre un paro cardíaco, a menudo necesita una descarga eléctrica de un DEA para que su corazón vuelva a latir. Estos dispositivos portátiles analizan el ritmo cardíaco e indican al usuario que administre una descarga, si es necesario, a través de parches colocados en el pecho de la víctima.

Pero aunque muchos estados exigen la disponibilidad de DEA en lugares públicos como aeropuertos, centros comerciales y escuelas, a menudo no son fáciles de localizar.

Un estudio con datos de 2019 a 2022 reveló que, tras un paro cardíaco en un lugar público, los transeúntes utilizaron un DEA el 7% de las veces y realizaron resucitación cardiopulmonary (RCP) el 42 % de las veces.

El recurso más completo para identificar un DEA es una fundación sin fines de lucro llamada PulsePoint, que ha registrado 185.000 desfibriladores en 5.400 comunidades en el país, según Shannon Smith, vicepresidenta de comunicaciones de PulsePoint. Si se solicita, la organización ayudará a una comunidad a crear su registro de DEA y a conectarlo al servicio de emergencias de la zona de forma gratuita.

PulsePoint lanzó recientemente un registro nacional de DEA para impulsar esta iniciativa.

A través de una aplicación complementaria, los usuarios con formación en RCP pueden ofrecerse como voluntarios para recibir alertas sobre posibles paros cardíacos en un radio de aproximadamente 400 metros cuando se reciben llamadas del servicio de respuesta a emergencias de la comunidad. La aplicación también identifica los DEA registrados en las cercanías.

“PulsePoint es lo más parecido a un registro nacional que tenemos”, dijo Elijah White, presidente de la división de tecnología de cuidados intensivos de Zoll, un fabricante líder de DEA. La empresa ha proporcionado a PulsePoint la información de ubicación de todos sus DEA. Aun así, PulsePoint solo ha registrado una pequeña parte de los DEA en el país.

“Es solo el comienzo”, expresó White. Otros factores también pueden impedir que los transeúntes intervengan para ayudar. Pueden carecer de formación o confianza en la RCP, o temer responsabilidades si algo sale mal.

En general, la responsabilidad no debería ser una preocupación. Los 50 estados y Washington, D.C., cuentan con leyes de “buen samaritano” que protegen a los transeúntes de la responsabilidad legal si intervienen de buena fe en una emergencia médica.

Sin embargo, la formación puede ser un obstáculo importante. Un estudio reveló que solo el 18% de las personas informaron haber recibido formación en RCP en los dos años anteriores, un período clave para el mantenimiento de las habilidades. Dos tercios de las personas informaron haber recibido formación en algún momento.

Una forma de impulsar la formación es volverla obligatoria, y muchos estados exigen que los estudiantes reciban formación en RCP para graduarse.

Sin embargo, aunque el 86% de los estudiantes de secundaria informaron haber recibido algún tipo de formación, solo el 58% dijo saber cómo aplicar sus habilidades, y una proporción similar afirmó saber usar un DEA.

“Tenemos trabajo por hacer”, dijo Dianne Atkins, cardióloga pediátrica y voluntaria de la AHA desde hace mucho tiempo, quien dijo que garantizar la capacitación en la escuela secundaria es una prioridad absoluta para la AHA.

Otros países han priorizado la capacitación de sus residentes en el uso de DEA y RCP durante muchos años, con cierto éxito.

En Dinamarca, esta capacitación es obligatoria para obtener el permiso de conducir desde la década del 2000, y los estudiantes de secundaria también deben recibir capacitación. En una encuesta, el 45% de la población declaró haber recibido capacitación en su lugar de trabajo. En el estudio, el 81% de los encuestados del público general declaró haber recibido capacitación en RCP y el 54% en el uso de un DEA.

Noruega imparte capacitación en primeros auxilios en escuelas primarias desde 1961 y exige la capacitación en RCP para obtener la licencia de conducir. El 90% de la población declaró haber recibido capacitación en RCP.

En Estados Unidos, hay muchos cursos de capacitación disponibles, en línea y presenciales, que se completan en solo unas horas. Para alguien que nunca ha aprendido habilidades básicas de soporte vital, la capacitación puede ser reveladora.

Esta reportera, sin formación previa, se sorprendió al descubrir la fuerza y ​​rapidez con la que se debe presionar el pecho de un maniquí para realizar la RCP correctamente: de 100 a 120 compresiones por minuto a una profundidad de al menos 5 cm.

Lo más importante es que la gente común conozca los fundamentos lo suficiente como para “sentirse segura de llamar al 911 y presionar fuerte y rápido el pecho de alguien”, afirmó Audrey Blewer, profesora adjunta de medicina familiar y salud comunitaria en la Facultad de Medicina de la Universidad de Duke, quien ha publicado numerosos estudios sobre la RCP por parte de desconocidos, y el uso del DEA. “Eso no requiere una tarjeta de certificación ni formación reciente”.

Durante una emergencia, los operadores del 911 también pueden desempeñar un papel crucial al guiar a las personas en la RCP y el manejo del DEA, explicó David Hiltz, director del programa de voluntarios HeartSafe Communities de la Citizen CPR Foundation, una organización sin fines de lucro que trabaja para mejorar la supervivencia tras un paro cardíaco mediante la formación y la educación.

Phil Clough se ha mantenido en contacto con Rebecca Sada, la mujer que se desplomó en el aeropuerto de Buffalo ese día de junio mientras regresaba a casa de un viaje para visitar a su hija. Sada, quien no tenía antecedentes de problemas cardíacos antes de sufrir un paro, ahora tiene un desfibrilador automático implantado en el pecho para estabilizar un problema eléctrico en su corazón que no se le había diagnosticado previamente. Ella y su esposo han invitado a Clough a cenar y son amigos para toda la vida, dijo.

Otro cambio que se produjo a raíz del paro cardíaco de Sada: ella y su esposo se certificaron en RCP y DEA.

“Ahora, si necesitáramos ayudar a alguien en el futuro, podríamos hacerlo”, aseguró Sada.

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 first 100 days of the Trump administration have been historic

Expanding educational freedom and opportunities

Adelaide Tovar, a University of Michigan scientist who researches genes related to diabetes, used to feel like an impostor in a laboratory. Tovar, 32, grew up poor and was the first in her family to graduate from high school. During her first year in college, she realized she didn’t know how to study.

But after years of studying biology and genetics, Tovar finally got proof that she belonged. Last fall, the National Institutes of Health awarded her a prestigious grant. It would fund her research and put her on track to be a university professor and eventually launch a laboratory of her own.

“I felt like receiving the award was a form of acceptance, like I had finally made it,” Tovar said. “But I think many of us now fear that this is going to poison the rest of our careers.”

Tovar is one of nearly 200 young scientists across the nation whose research and job prospects have been jeopardized by the sudden termination of the NIH’s MOSAIC grant program, one of many ended by sweeping cuts across the federal scientific agencies. The grant was created by the first Trump administration to foster a new generation of diverse scientists in biomedical research, then defunded in the second Trump administration’s ongoing purge of diversity, equity, and inclusion programs.

In interviews with KFF Health News, Tovar and three other grant recipients worried that the loss of funding — coupled with President Donald Trump’s crusade against diversity programs — may transform a grant that was supposed to jump-start their careers into a blemish on their résumés that could cost them the jobs and funding that make their research possible.

“We might end up blacklisted by the NIH because of having this award — for who we are,” said Erica Rodriguez, 35, a grant recipient at Columbia University who conducts brain research that could lead to a better understanding of psychiatric disorders.

“Because not only is it for people with diverse backgrounds,” she said, “but it’s for people who advocate for other people with diverse backgrounds.”

The MOSAIC program — short for “Maximizing Opportunities for Scientific and Academic Independent Careers” — was created in 2019 to provide early-career support to promising scientists from “underrepresented backgrounds” with a long-term goal to “enhance diversity in the biomedical research workforce,” according to NIH grant documents.

The five-year grant was awarded to scientists who have finished their doctorates and work in research laboratories at universities across the country. In the first two years, scientists generally receive $100,000 to $150,000, which is largely used to pay their salaries.

By the third year, the scientists are expected to have been hired as a professor, likely at a different university, where the grant funding helps them launch their own research lab. In the final three years of the grant, funding increases to about $250,000 a year, which is used to buy supplies and hire other young scientists to work in the lab, completing the cycle.

MOSAIC awardees were chosen using a broad definition of diversity beyond race, gender, and disability. It includes those who grew up in poor households or rural areas or were raised by parents who do not have college degrees. Many of those chosen for the grant also have a history of supporting other budding scientists from underrepresented backgrounds.

MOSAIC funds research on cancer, Alzheimer’s disease, spinal cord injuries, cochlear implants, fentanyl overdoses, stroke recovery, neurodevelopmental disorders, and more.

But in recent weeks the NIH has notified most MOSAIC recipients that the program was “terminated” and their funding will end by this summer, regardless of the years left on their grant, according to NIH emails reviewed by KFF Health News. Other awardees have received no official notification and only learned through word of mouth that their funding was canceled.

Vianca Rodriguez Feliciano, a spokesperson for the Department of Health and Human Services, confirmed in an email statement to KFF Health News that MOSAIC had been defunded. She said the grants “no longer align” with agency priorities or the president’s executive orders “eliminating wasteful, ideologically driven DEI initiatives.”

Trump signed one of those orders on his first day back in the White House, instructing the entire federal government to end programs that promoted diversity, referring to them as “shameful,” “immoral,” and an “immense public waste.”

Diversity programs have been slashed across the government, including at the NIH and other HHS agencies, which have canceled hundreds of grants worth billions of dollars since March. On April 21, the NIH issued a notice that banned recipients from receiving grants if they have DEI programs and said the agency could “recover all funds” from those that do not comply.

“At HHS, we are dedicated to restoring our agencies to their tradition of gold-standard, evidence-based science – not one driven by political ideology,” Rodriguez Feliciano said. “We will leave no stone unturned in identifying the root causes of the chronic disease epidemic as part of our mission to Make America Healthy Again.”

Many MOSAIC scientists are focused on chronic diseases. Tovar, for example, researches specific genes that make people more susceptible to diabetes, which affects about 38 million Americans.

“We have a lot of treatments for diabetes that are great for the people that they work for,” Tovar said. “In my research, I use genetics to help find better drug targets so we can find medicines for people who don’t already have therapies that work.”

In interviews, Tovar and the other MOSAIC recipients described how the sudden loss of funding will throw research and careers into upheaval: Some postdoctoral researchers may lose their current jobs when funding runs dry in months; awardees competing for professor jobs will lose research funding that made them stronger candidates; and those already hired will have less money for salaries and supplies in their research labs.

Ashley Albright, 32, who grew up poor in rural North Carolina, is now a scientist at the University of California-San Francisco, where she studies Stentor coeruleus, a large single-celled organism with regenerative abilities. She plans to start applying for professor jobs this fall.

Albright said MOSAIC funding would have given her a “better shot at my dream,” which was to give other scientists from diverse backgrounds opportunities to work in her research lab.

“I feel crushed,” she said. “I feel like someone is stepping on half of my life. … I’ve spent the last 10 years in grad school and my postdoc working toward this so I can do science, but also help other people do science.”

Hannah Grunwald, 33, a grant recipient at Harvard who studies eyeless cave fish to better understand complex genetic traits, said one of her worst fears was that universities won’t hire MOSAIC awardees at a time when the White House is ordering schools to abandon DEI programs and withholding billions from those that do not bend to the Trump agenda.

“There has been an enormous debate in our community about what we should say on our résumés,” Grunwald said. “I just don’t know if having my grant canceled because it had to do with diversity is going to limit my ability to get funding in the future.”

The termination of MOSAIC drew quick condemnation from several scientific organizations that receive grant funding to work closely with the awarded scientists, with some calling it “short-sighted” and “a significant step backward.”

Mary Munson, president of the American Society for Cell Biology, who has mentored awardees since MOSAIC began, became choked up and covered her face with her hands as she considered the possibility the grant could end up holding them back.

“Taking this grant away now does not take away the fact that they won this competitive award. It doesn’t take away that they are amazing scientists,” Munson said. “I hope that institutions will still see that nonetheless.”

Stefano Bertuzzi, CEO of the American Society for Microbiology, which also mentors grant awardees, said the mass termination of MOSAIC and other NIH grants may have a cumulative effect that will stifle scientific innovation for decades.

Bertuzzi, who immigrated from Italy in the ’90s because of America’s robust funding for science, said scientists will not stay in or flock to a nation where research funding vanishes on a political whim.

“We are going to be losing a full generation of scientists,” Bertuzzi said. “Other countries in the world will thrive.”

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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POLSON, Mont. — When someone accused of a crime in this small northwestern Montana town needs mental health care, chances are they’ll be locked in a basement jail cell the size of a walk-in closet.

Prisoners, some held in this isolation cell for months, have scratched initials and the phrase “love hurts” into the metal door’s brown paint. Their pacing has worn a path into the cement floor. Many are held in a sort of limbo, not convicted of a crime but not stable enough to be released. They sleep on a narrow cot next to a toilet. The only view is a fluorescent-lit hallway visible through a small window in the door.

Lake County Attorney James Lapotka stood at the cell’s center talking about the people he helps confine here. He stretched out his arms, his fingertips just shy of touching opposite walls. “I’m getting anxiety just being in here,” Lapotka said.

Last year, a man sentenced for stealing a rifle stayed in that cell 129 days. He was waiting for a spot to open at Montana’s only state-run psychiatric hospital after a mental health evaluator deemed he needed care, according to court records.

A man in the next cell around the same time was on the same waitlist roughly five months. He faced near-daily stints in the jail’s emergency restraint chair — a steel contraption wrapped in foam with straps for his shoulders, arms, and legs. He regularly saw the jail’s mental health doctor. Still, Joel Shearer, a Lake County detention commander, said the man routinely experienced psychotic episodes and asked to be locked in the chair when he felt one coming on and stayed there until his screams subsided.

“Somebody who’s having a mental health crisis — they don’t belong here,” Lapotka said. “We don’t have anywhere else.”

Lake County’s two, roughly 30-square-foot isolation cells are an example of how communities nationwide are failing to provide mental health services — crisis care, in particular. Nearly half of the people locked in local jails in the U.S. have a mental illness.

More than half of Wyoming’s 23 sheriffs told lawmakers there that they were housing people in crisis awaiting mental health care for months, WyoFile reported in January. Nevada has struggled despite a $500 daily fine for each jailed patient whose treatment is delayed. Disability Rights Oregon has said delays in that state continue after two people died in jail while on the state’s psychiatric waitlist.

In Montana, counties are jailing mental health patients they’re not equipped to handle when the Montana State Hospital is at capacity. Few local hospitals have their own inpatient psychiatric beds. As a result, people arrested for anything from petty theft to felony assault can be jailed for months or longer as their mental health worsens. Many haven’t been convicted of a crime.

Montana officials have known for years they have a problem. State officials have said they don’t have space for all the people ordered to the hospital. The psychiatric hospital has 270 beds, with 54 for people in the criminal justice system. Staffing shortages can shrink that capacity further.

The Montana Department of Public Health and Human Services backed two bills this legislative session that would shield the state from liability for delays when the Montana State Hospital is full. Ahead of the bills, the agency wrote the hospital has “struggled to maintain appropriate levels of care” due to money and staffing constraints, a lack of community-based services, and having no control over the flow patients Montana courts send its way.

The agency also announced April 23 that $6.5 million was available through one-time grants to help set up jail-based mental health stabilization services.

Officials have said patients deserve care closer to home, in less restrictive settings. But counties say the local services needed don’t exist.

“You have to do the hard things first,” said Matt Kuntz, executive director of the Montana chapter of the National Alliance on Mental Illness. “You have to build the beds.”

Health advocates have backed a proposal that would require the state to pay for community commitments. That measure is headed to Republican Gov. Greg Gianforte after passing the state House and Senate. Another bill that was still pending would create a new psychiatric hospital for people in the justice system. But implementing those ideas could take years.

The number of inpatient beds for people with a serious mental illness nationwide has plummeted. At one time, that drop was intentional, part of a movement away from locking people up in state-run mental hospitals. But the intended fix, local homelike centers, hasn’t filled the void.

One of Montana’s biggest providers, Western Montana Mental Health Center, had to close some of its crisis sites because of money problems, said Western’s CEO, Bob Lopp. That includes a facility less than a mile from the Lake County jail.

“If that’s not where the funding is, you can’t just do it for the sake of argument and hope that it comes,” Lopp said.

Gianforte has promised to pour money into rebuilding the state’s behavioral health system. Mental health workers in small towns find such promises hard to trust after seeing local services come and go for years.

Health department spokesperson Holly Matkin said the agency is proud of its work to fix “systems that have been broken for too long” and that it will improve services for people who need inpatient care in their communities.

Lake County is known to outsiders as an Instagram-worthy stop on their way to Glacier National Park. It overlaps with the Flathead Indian Reservation, land of the Bitterroot Salish, Upper Pend d’Oreille, and Kootenai tribes. It’s home to a slice of the Rocky Mountains and a gateway to millions of acres of wilderness. Polson, the county seat and site of the jail, is a town of 5,600 on the southern shore of Flathead Lake, one of the largest lakes west of the Mississippi River.

Vincent River has worked as the jail’s sole mental health clinician for 25 years. He said he’s not always available because he’s the only psychologist in four northwestern Montana counties evaluating whether a person in jail needs psychiatric care.

Some are released without care if they linger too long on the state hospital’s waitlist.

“I talk to these family members. I hear them plead with me with their fear in their voices and tell me all that’s been going on for days or weeks or months,” River said. “And then I can’t get people into the hospital. That is a giant crisis.”

It’s not just the state hospital. River said he can’t get people into any psychiatric bed in Montana because there are too few. Instead, he tries to stabilize people while they’re jailed. That has shortfalls.

The jail can’t force someone in psychosis to take medication without a court order and a qualified doctor on hand to administer the prescription. Lake County’s aging facility has faced lawsuits because of poor conditions amid overcrowding, and River has to see patients wherever there’s room.

There isn’t even space for the jail’s restraint chair. Jail workers leave strapped-down prisoners in a hallway or locker room.

River said many gradually get better and leave isolation. Some don’t.

“They languish there, psychotic and lonely,” he said, “at the mercy of what the voices are telling them.”

Locals are working to fill some gaps. A mobile team launched in February is staffed by people who have lived with mental and substance use disorders to provide peer support. But someone truly in crisis has only two options: jail or an emergency room.

The room reserved for people in crisis at Providence St. Joseph Medical Center in Polson leaves patients both isolated and without privacy. The locked door’s thick glass looks onto a busy emergency room hallway.

Those who deteriorate enough to be deemed dangerous to themselves or others are sent down the road to jail.

Rebecca Bontadelli, an ER physician, said patients can be housed in the room for days as hospital staffers scour Montana and nearby states for an open psychiatric bed. Some reject care in the meantime.

“We’re not really helping them,” Bontadelli said. “They feel like they’re in prison.”

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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Federal Investigations Probe Reports of Race-Based Criteria Used In lieu of Merit-Based Standards for Journal Membership and Article Publication

For several years, Fred Neary had been seeing five doctors at the Baylor Scott & White Health system, whose 52 hospitals serve central and northern Texas, including Neary’s home in Dallas. But in October, his Humana Medicare Advantage plan — an alternative to government-run Medicare — warned that Baylor and the insurer were fighting over a new contract. If they couldn’t reach an agreement, he’d have to find new doctors or new health insurance.

“All my medical information is with Baylor Scott & White,” said Neary, 87, who retired from a career in financial services. His doctors are a five-minute drive from his house. “After so many years, starting over with that many new doctor relationships didn’t feel like an option.”

After several anxious weeks, Neary learned Humana and Baylor were parting ways as of this year, and he was forced to choose between the two. Because the breakup happened during the annual fall enrollment period for Medicare Advantage, he was able to pick a new Advantage plan with coverage starting Jan. 1, a day after his Humana plan ended.

Other Advantage members who lose providers are not as lucky. Although disputes between health systems and insurers happen all the time, members are usually locked into their plans for the year and restricted to a network of providers, even if that network shrinks. Unless members qualify for what’s called a special enrollment period, switching plans or returning to traditional Medicare is allowed only at year’s end, with new coverage starting in January.

But in the past 15 months, the Centers for Medicare & Medicaid Services, which oversees the Medicare Advantage program, has quietly offered roughly three-month special enrollment periods allowing thousands of Advantage members in at least 13 states to change plans. They were also allowed to leave Advantage plans entirely and choose traditional Medicare coverage without penalty, regardless of when they lost their providers. But even when CMS lets Advantage members leave a plan that lost a key provider, insurers can still enroll new members without telling them the network has shrunk.

At least 41 hospital systems have dropped out of 62 Advantage plans serving all or parts of 25 states since July, according to Becker’s Hospital Review. Over the past two years, separations between Advantage plans and health systems have tripled, said FTI Consulting, which tracks reports of the disputes.

CMS spokesperson Catherine Howden said it is “a routine occurrence” for the agency to determine that provider network changes trigger a special enrollment period for their members. “It has happened many times in the past, though we have seen an uptick in recent years.”

Still, CMS would not identify plans whose members were allowed to disenroll after losing health providers. The agency also would not say whether the plans violated federal provider network rules intended to ensure that Medicare Advantage members have sufficient providers within certain distances and travel times.

The secrecy around when and how Advantage members can escape plans after their doctors and hospitals drop out worries Sen. Ron Wyden of Oregon, the senior Democrat on the Senate Finance Committee, which oversees CMS.

“Seniors enrolled in Medicare Advantage plans deserve to know they can change their plan when their local doctor or hospital exits the plan due to profit-driven business practices,” Wyden said.

The increase in insurer-provider breakups isn’t surprising, given the growing popularity of Medicare Advantage. The plans attracted about 54% of the 61.2 million people who had both Medicare Parts A and B and were eligible to sign up for Medicare Advantage in 2024, according to KFF, a health information nonprofit that includes KFF Health News.

The plans can offer supplemental benefits unavailable from traditional Medicare because the federal government pays insurers about 20% more per member than traditional Medicare per-member costs, according to the Medicare Payment Advisory Commission, which advises Congress. The extra spending, which some lawmakers call wasteful, will total about $84 billion in 2025, MedPAC estimates. While traditional Medicare does not offer the additional benefits Advantage plans advertise, it does not limit beneficiaries’ choice of providers. They can go to any doctor or hospital that accepts Medicare, as nearly all do.

Sanford Health, the largest rural health system in the U.S., serving parts of seven states from South Dakota to Michigan, decided to leave a Humana Medicare Advantage plan last year that covered 15,000 of its patients. “It’s not so much about the finances or administrative burden, although those are real concerns,” said Nick Olson, Sanford Health’s chief financial officer. “The most important thing for us is the fact that coverage denials and prior authorization delays impact the care a patient receives, and that’s unacceptable.”

The National Association of Insurance Commissioners, representing insurance regulators from every state, Puerto Rico, and the District of Columbia, has appealed to CMS to help Advantage members.

“State regulators in several states are seeing hospitals and crucial provider groups making decisions to no longer contract with any MA plans, which can leave enrollees without ready access to care,” the group wrote in September. “Lack of CMS guidance could result in unnecessary financial or medical injury to America’s seniors.”

The commissioners appealed again last month to Health and Human Services Secretary Robert F. Kennedy Jr. “Significant network changes trigger important rights for beneficiaries, and they should receive clear notice of their rights and have access to counseling to help them make appropriate choices,” they wrote.

The insurance commissioners asked CMS to consider offering a special enrollment period for all Advantage members who lose the same major provider, instead of placing the burden on individuals to find help on their own. No matter what time of year, members would be able to change plans or enroll in government-run Medicare.

Advantage members granted this special enrollment period who choose traditional Medicare get a bonus: If they want to purchase a Medigap policy — supplemental insurance that helps cover Medicare’s considerable out-of-pocket costs — insurers can’t turn them away or charge them more because of preexisting health conditions.

Those potential extra costs have long been a deterrent for people who want to leave Medicare Advantage for traditional Medicare.

“People are being trapped in Medicare Advantage because they can’t get a Medigap plan,” said Bonnie Burns, a training and policy specialist at California Health Advocates, a nonprofit watchdog that helps seniors navigate Medicare.

Guaranteed access to Medigap coverage is especially important when providers drop out of all Advantage plans. Only four states — Connecticut, Massachusetts, Maine, and New York — offer that guarantee to anyone who wants to reenroll in Medicare.

But some hospital systems, including Great Plains Health in North Platte, Nebraska, are so frustrated by Advantage plans that they won’t participate in any of them.

It had the same problems with delays and denials of coverage as other providers, but one incident stands out for CEO Ivan Mitchell: A patient too sick to go home had to stay in the hospital an extra six weeks because her plan wouldn’t cover care in a rehabilitation facility.

With traditional Medicare the only option this year for Great Plains Health patients, Nebraska insurance commissioner Eric Dunning asked for a special enrollment period with guaranteed Medigap access for some 1,200 beneficiaries. After six months, CMS agreed.

Once Delaware’s insurance commissioner contacted CMS about the Bayhealth medical system dropping out of a Cigna Advantage plan, members received a special enrollment period starting in January.

Maine’s congressional delegation pushed for an enrollment period for nearly 4,000 patients of Northern Light Health after the 10-hospital system dropped out of a Humana Advantage plan last year.

“Our constituents have told us that they are anticipating serious challenges, ranging from worries about substantial changes to cost-sharing rates to concerns about maintaining care with current providers,” the delegation told CMS.

CMS granted the request to ensure “that MA enrollees have access to medically necessary care,” then-CMS Administrator Chiquita Brooks-LaSure wrote to Sen. Angus King (I-Maine).

Minnesota insurance officials appealed to CMS on behalf of some 75,000 members of Aetna, Humana, and UnitedHealthcare Advantage plans after six health systems announced last year they would leave the plans in 2025. So many provider changes caused “tremendous problems,” said Kelli Jo Greiner, director of the Minnesota State Health Insurance Assistance Program, known as a SHIP, at the Minnesota Board on Aging. SHIP counselors across the country provide Medicare beneficiaries free help choosing and using Medicare drug and Advantage plans.

Providers serving about 15,000 of Minnesota’s Advantage members ultimately agreed to stay in the insurers’ networks. CMS decided 14,000 Humana members qualified for a network-change special enrollment period.

The remaining 46,000 people — Aetna and UnitedHealthcare Advantage members — who lost access to four health systems were not eligible for the special enrollment period. CMS decided their plans still had enough other providers to care for them.

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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OCR announces a settlement with Comprehensive Neurology, PC to resolve a potential violation of the HIPAA Rules.

Hospitals have spent years amassing political influence at the federal and state levels. According to the nonprofit OpenSecrets, hospitals and nursing homes’ federal lobbying spending rose from $35 million in 2000 to more than $133 million last year, a 280% increase. 

They recently had a unique opportunity to flex some of that political muscle in Montana, where the state’s Medicaid expansion program was scheduled to expire in June unless legislators and the governor renewed it. 

Conservative lawmakers and groups saw an opportunity to terminate or narrow the Medicaid expansion program that cost about $1 billion in federal and state taxpayer money last year to cover tens of thousands of low-income adults. Ultimately, the conservative Republican lawmakers who occupy state House and Senate leadership positions sought to add requirements to the program or receive concessions from hospitals, such as a promise to bolster their community benefit spending, in return for continuing the program that provides them with revenue. 

What was expected to be one of the more contentious debates of the legislative session never happened. The Medicaid expansion renewal bill sailed through with little difficulty and few changes. 

The hospitals spent the last year working to form a coalition with businesses, health clinics, physician groups, insurers, and advocates for people with low incomes to push for extension of Medicaid expansion, which provides government health coverage to about 74,500 low-income, nondisabled Montanans. That work paid off when Democratic and moderate Republicans lawmakers joined forces to push the bill through. 

Hospital lobbyists, led by the Montana Hospital Association, not only helped steamroll Medicaid expansion through the legislature, but they also defeated nearly all attempts to add new requirements to the program and to place new regulations on the hospitals themselves. 

The hospitals’ political pull is acknowledged by frustrated conservative lawmakers who contend that the facilities, most of which are nonprofit organizations largely exempt from state and federal taxes, need more oversight and transparency. As Republican state Sen. Greg Hertz put it, “Hospitals don’t seem to want to come to the table to discuss anything, whether it’s transparency, controlling costs, or providing more information to the public on services.” 

Hospitals say they’re willing to debate ways to improve health care in Montana. But when it comes to regulations they regard as onerous — or lawmaker criticism that they are uncooperative — they aren’t shy about pushing back. “I think that we’ve demonstrated that we work on all kinds of health policies,” said Montana Hospital Association president and CEO Bob Olsen.

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Cuando la administración Trump recortó a finales de marzo más de $11.000 millones en fondos estatales destinados a la era de covid-19, los programas de recuperación de adicciones sufrieron pérdidas rápidas.

Una organización de Indiana que emplea a personas en recuperación para ayudar a compañeros con trastornos por adicciones y afecciones mentales se vio obligada a despedir a tres trabajadores. Un servicio de apoyo digital en Texas para personas con las mismas problemáticas se preparó para cerrar su línea telefónica 24/7 en una semana. Un programa de Minnesota centrado en la adicción en la comunidad de África Oriental restringió su alcance a personas vulnerables que viven en las calles.

Aunque la asistencia federal se otorgó durante la pandemia de covid y algunos de los fondos apoyaron actividades relacionadas con enfermedades infecciosas, una parte considerable se destinó a programas de salud mental y adicciones.

Estas últimas son preocupaciones crónicas en Estados Unidos que se agravaron durante la pandemia y siguen afectando a millones de estadounidenses.

Colorado, por ejemplo, recibió más de $30 millones para estos programas y Minnesota casi $28 millones, según las agencias de salud y servicios humanos de esos estados.

En muchos casos, este dinero se destinó a servicios de recuperación de adicciones, que van más allá del tratamiento tradicional para ayudar a las personas con adicciones a reconstruir sus vidas. Estos programas realizan tareas que las aseguradoras a menudo no reembolsan, como llevar a las personas a citas médicas y audiencias judiciales, preparer currículums y capacitarlas para nuevos empleos, encontrarles alojamiento y ayudarlas a establecer vínculos sociales no relacionados con las drogas.

Un juez federal bloqueó temporalmente los recortes de la administración Trump, lo que permitió que, por ahora, los programas siguieran recibiendo fondos federales. Sin embargo, muchos de los afectados afirman que no pueden recontratar fácilmente a las personas que despidieron ni reactivar los servicios que redujeron.

Además, no están seguros de poder sobrevivir a largo plazo en un entorno de incertidumbre y temor, sin saber cuándo se revocará el fallo del juez o se recortará otra fuente de financiamiento.

La semana en que se recortaron drásticamente los fondos, la administración Trump también anunció una reorganización masiva del Departamento de Salud y Servicios Humanos (HHS), que incluye la consolidación de la principal agencia federal dedicada a los servicios de recuperación de adicciones. Sin una oficina independiente como la Administración de Servicios de Abuso de Sustancias y Salud Mental, muchos defensores temen que el trabajo de recuperación, y  el dinero para apoyarlo, ya no sea una prioridad.

Aunque fundaciones privadas y gobiernos estatales podrían intervenir, es poco probable que puedan igualar las sumas de financiación federal.

“El apoyo a la recuperación se considera opcional”, dijo Racquel García, fundadora de HardBeauty, una organización de recuperación de adicciones con sede en Colorado.

Los recortes federales ponen en riesgo una subvención de cerca de $75.000 que su equipo había recibido para atender a mujeres embarazadas con adicciones en dos condados rurales de Colorado.

“Es muy fácil tomar decisiones drásticas desde arriba por dinero, cuando no tienes que ser quien le diga a la madre: ‘No podemos ir hoy'”, dijo García. “Cuando nunca tienes que sentarte frente a la madre que realmente necesitaba que estuvieras allí”.

Las afecciones de salud mental, incluidos los trastornos por consumo de sustancias, son una de las principales causas de mortalidad materna en el país. Y, aunque las muertes por sobredosis a nivel nacional han disminuido recientemente, las tasas han aumentado en muchas comunidades afroamericanas y nativas americanas. A muchas personas en el campo de las adicciones les preocupa que estos recortes de fondos puedan revertir el progreso logrado con tanto esfuerzo.

Emily Hilliard, vocera del HHS, declaró a KFF Health News que el departamento se está reorganizando para mejorar la eficiencia, fomentar un enfoque más coordinado para la adicción y priorizar la financiación de proyectos que se alineen con la iniciativa presidencial Make America Healthy Again.

“Nuestro objetivo es optimizar los recursos y eliminar las redundancias, garantizando que los servicios esenciales de salud mental y tratamiento de adicciones se presten de forma más eficaz”, dijo en un comunicado.

Pero para Garcia, no se siente como una mejora. Se siente como abandonar a madres necesitadas.

Entre el momento en que se anunciaron los recortes y cuando el juez federal los suspendió, dos mujeres atendidas por el programa de García dieron a luz, contó. Aunque la financiación de su subvención estaba en el limbo, García le dijo a su empleada que estuviera presente junto a las madres.

La empleada hizo seguimiento con visitas diarias a las nuevas mamás, las conectó con servicios de tratamiento o vivienda cuando fue necesario y las ayudó a navegar por el sistema de servicios infantiles.

“Simplemente no puedo dejar a las madres sin servicios”, dijo García. “Simplemente no puedo hacerlo”.

Tampoco puede abandonar a esa empleada, agregó. Aunque la financiación federal proporcionó la mitad de su salario, García la ha mantenido trabajando a tiempo completo.

García dijo que emplea principalmente a mujeres que están en proceso de recuperación, muchas de las cuales pasaron años atrapadas en situaciones de abuso, dependiendo de los beneficios sociales. Ahora están sobrias y han encontrado un trabajo significativo que les permite mantener a sus familias, dijo. “Creamos nuestra propia fuerza laboral de mamás que ayudan a otras mamás”.

Este tipo de desarrollo de la fuerza laboral en recuperación parece estar alineado con los objetivos del Partido Republicano de lograr que más personas trabajen y reducir la dependencia de la beneficencia.

Las prioridades de la política de drogas de la administración Trump, publicadas a principios de abril, identificaron la creación de “una fuerza laboral calificada y lista para la recuperación” y el fortalecimiento de los servicios de apoyo entre pares para la recuperación como esfuerzos cruciales para ayudar a las personas a “encontrar la recuperación y llevar una vida productiva y saludable”.

Muchos programas de recuperación capacitan a personas para empleos manuales, lo que podría respaldar el objetivo de Trump de revivir la industria manufacturera.

Sin embargo, las acciones de la administración parecen entrar en conflicto con sus objetivos declarados, dijo Rahul Gupta, quien fue el zar antidrogas durante la administración Biden.

“No se puede tener manufactura si las personas no pasan una prueba de drogas en orina o continúan sufriendo adicciones o recaídas”, afirmó Gupta, quien ahora preside GATC Health, una empresa que utiliza inteligencia artificial para el desarrollo de fármacos.

Incluso si Vuelve a haber más empleos en las zonas rurales de Estados Unidos, recortar la financiación de los servicios de recuperación y de la principal oficina federal que supervisa estos esfuerzos podría significar que menos personas sean “empleables”, afirmó Gupta.

Las investigaciones sobre programas de recuperación, en particular los dirigidos por personas con experiencia personal en adicciones, sugieren que pueden aumentar la participación en el tratamiento ordenado por el tribunal, reducir la prevalencia de reincidencia, fomentar la asistencia a las citas de tratamiento y mejorar la probabilidad de reunificación y estabilización familiar.

Billy O’Bryan ve estos beneficios a diario. Como director estatal de la organización nacional sin fines de lucro Young People in Recovery, O’Bryan supervisa cerca de una docena de filiales en Kentucky que enseñan a personas en recuperación habilidades para la vida, como manejar una cuenta bancaria y presentarse a entrevistas de trabajo, y les muestran cómo divertirse en sobriedad, mediante caminatas en grupo y juegos de Ultimate Frisbee que brillan en la oscuridad.

Brindando servicios de recuperación “es cuando realmente invertimos en su futuro”, dijo O’Bryan, quien también está en recuperación.

Seis de sus capítulos se vieron afectados por los recortes de fondos federales. Por eso ha tenido que recurrir al fondo de emergencia de la organización para pagar al personal, y reducir los eventos comunitarios, incluyendo las jornadas de limpieza en las que los miembros del capítulo recogen jeringas usadas de la calle, distribuyen naloxona, el medicamento para revertir sobredosis, y hablan con personas que consumen drogas sobre la posibilidad de recuperarse.

Actualmente está explorando iniciativas de recaudación de fondos, pero no todos sus capítulos tienen la misma capacidad.

“En una ciudad como Louisville, recaudar fondos no es un problema”, dijo O’Bryan, “pero cuando uno llega a Grayson, Kentucky”, una zona rural en los Apalaches, “no hay muchas oportunidades”.

En Minnesota, Kaleab Woldegiorgis y sus colegas de la Niyyah Recovery Initiative solían pasar horas al día en comedores sociales, eventos comunitarios, mezquitas y en las calles de barrios musulmanes y África Oriental, intentando conectar con personas que consumen drogas. Hablaban somalí, amárico y suajili, entre otros idiomas.

Esas iniciativas de divulgación les permitieron encontrar personas que necesitaban servicios de recuperación y que no los buscaban por sí mismas, afirmó Woldegiorgis, quien anteriormente asistió a los grupos de apoyo de Niyyah cuando él mismo lidiaba con la adicción.

Tras construir relaciones con las personas, Woldegiorgis podía ayudarlas a conectarse con servicios de recuperación formales que facturan a sus seguros, explicó. Pero la ayuda no siempre podía esperar a un contrato.

Una tarde, poco antes de los recortes de fondos federales, Woldegiorgis y sus colegas hablaron con un hombre que comenzó a llorar, contando cómo había querido recibir tratamiento unos días antes, pero había perdido sus pertenencias, había vuelto a consumir drogas y había terminado en la calle.

Woldegiorgis dijo que ayudó al hombre a reconectarse con una hermana y a comenzar a explorar opciones de tratamiento.

Con los recortes, es posible que Niyyah ya no pueda apoyar este tipo de trabajo comunitario. Woldegiorgis teme que esto signifique que las personas no recibirán el mensaje de esperanza que puede surgir al interactuar con personas que pueden ser sus modelos de recuperación a seguir.

“La gente no recoge folletos para recibir estos mensajes. Y la gente no lee correos electrónicos ni mira mensajes publicitarios en ls calles y encuentra inspiración”, dijo. “La gente necesita gente”.

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For nearly three agonizing years, Mariah Freschi and her husband have been trying to have a second baby. The California mother recently underwent surgery to remove her blocked fallopian tubes, leaving in vitro fertilization as her only option to get pregnant. But the cost quoted by her Sacramento-area clinic was $25,000 — out of reach for Freschi, a preschool teacher, and her husband, a warehouse worker.

“When we first found out IVF was our only option, it just felt so overwhelming,” said Freschi, who has insurance through the California marketplace. “No one sets aside 20, 30 grand to grow your family.”

The Freschis are far from alone in requiring medical assistance to have children: About 13% of women and 11% of men in the U.S. experience infertility, while others are in a same-sex relationship, single, or want to preserve their eggs or sperm before undergoing various medical treatments.

And, like the Freschis, many Americans do not have health insurance that pays for IVF.

During his campaign, President Donald Trump vowed that the government would cover IVF or require insurers to cover it. In February, he signed an executive order seeking policy recommendations on expanding IVF access, dubbing himself the “fertilization president” a few weeks later.

Whether the administration’s efforts will change policy remains unknown, but state-level attempts to mandate fertility coverage reveal the gauntlet of budgetary and political hurdles that such initiatives face — obstacles that have led to millions of people being left out.

“There are economic opponents, and there are ideological opponents,” said Sean Tipton, a lobbyist for the American Society for Reproductive Medicine. “It is a tough lineup of opponents. And that’s very consistent from state to state.”

Twenty-two states have passed legislation requiring insurers to cover at least some fertility care, and 15 of those require coverage for IVF. The laws vary widely, though, when it comes to who and what gets covered, largely because of debates over cost. Fertility services can range from diagnostic testing and ovulation-enhancing drugs to IVF, widely considered the most effective but also the most expensive treatment, during which one or more lab-fertilized eggs are transferred to a uterus.

It’s mostly those footing the bill amid rising health care costs and state deficits that have voiced opposition. State insurance mandates “factor in significantly” when it comes to whether employers continue to provide coverage at all because of financial concerns, according to Chris Bond, a spokesperson for AHIP, which represents health insurers, who also said employers “want to have flexibility with how these benefits are structured.”

States cite concerns about higher premiums and the budget impact of having to cover government workers. In the past few years, infertility coverage bills in Minnesota, North Dakota, and Louisiana, for example, failed largely over cost.

IVF advocates, however, cite data from a decade ago showing that fertility care in states with mandates has accounted for less than 1% of total premium costs, a figure similar to estimates for newer mandates. And advocates often argue that building a family is a human right, though fertility care is disproportionately used by wealthy, white women. Covering IVF for the Medicaid population, which includes more than 70 million Americans, rarely works its way into legislative proposals.

The California Example

California is a case study in how many of these conversations play out. Cost concerns sank IVF legislation in the state for several years before lawmakers approved a mandate last year. SB 729 goes into effect July 1 and requires large employers with state-regulated health insurance to cover infertility diagnosis and treatment, including IVF. State employees will get coverage in 2027.

California’s mandate is considered one of the most comprehensive and inclusive in the country, said Barbara Collura, president of Resolve: The National Infertility Association, making same-sex couples and single parents eligible for coverage. But it still leaves out most of the state’s insured population, including those covered by Medicaid, the Affordable Care Act marketplace, and self-insured companies, which account for the majority of workers and are federally regulated.

Mimi Demissew, executive director of Our Family Coalition, an LGBTQ+ rights nonprofit that co-sponsored SB 729, said her group envisioned the broadest possible mandate, which would have included people covered by small employers, the marketplace, and other privately purchased plans. “We dreamed big,” she said. “But the pushback and the whittling down was because of the budget.”

Gov. Gavin Newsom’s finance department opposed SB 729 over concerns about the state’s budget and higher premiums. And groups representing the state’s health plans and employers cited costs in their opposition, with the California Chamber of Commerce calling health care “one of the most formidable expenses a business experiences,” per a legislative analysis.

The law going into effect this year is estimated to cover around 9 million people, 5 million fewer than originally proposed. Annual premiums, whose cost is typically shared by employers and employees, are projected to increase for people with state-regulated health insurance by approximately $40 per person covered in the first year.

Mandates Vary Widely by State

More than 10 states — including California — have what fertility experts call “comprehensive” coverage, which requires some insurers to cover IVF with minimal restrictions. But even in those states, large swaths of the population miss out.

In Massachusetts, which has one of the country’s oldest, broadest mandates for infertility coverage, including IVF, only about 30% of women were eligible as of 2019.

Those covered by these mandates, however, are grateful. Luisa Lopez, a nonprofit executive, credited the three IVF cycles that New York’s mandate covered with allowing her and her husband to have a baby after 10 years of trying.

“I feel very lucky to live in a state that prioritized this,” Lopez said. Still, she said, she was on the hook for thousands of dollars in copays and other costs.

In states with narrow mandates, coverage is elusive. With limited exceptions, only state employees have qualified for IVF coverage through Utah’s mandate, for example. Joseph Letourneau, a University of Utah fertility specialist who successfully lobbied for fertility preservation coverage for Medicaid patients and state employees with cancer, said he couldn’t recall ideological opposition to fertility coverage but that some legislators were concerned about raising costs.

Oklahoma and Kentucky limit coverage requirements to patients who wish to preserve their fertility because of specific medical conditions.

Pushback Beyond Costs

Some opponents of IVF coverage say life begins at the moment of conception and have expressed concerns about the disposal of embryos during the IVF process.

Chieko Noguchi, a spokesperson for the U.S. Conference of Catholic Bishops, said the Catholic Church teaches that IVF is morally wrong because it “involves the death or freezing of embryonic children and treats human beings like products that can be bought and ordered.”

In Republican-controlled-Georgia, some advocates say the proposal of abortion restrictions has distracted from efforts to mandate fertility coverage. SisterSong, a reproductive justice nonprofit, supports two bills that would require private insurers and Medicaid to cover IVF in Georgia. But, the organization’s director of maternal health and birth equity initiatives, Leah Jones, acknowledged a steep uphill battle given the costs and anti-abortion legislation that some advocates fear could criminalize IVF. Having to fight just for the legality of IVF, she said, detracts from expanding access.

“We’re always on the defense,” Jones said.

Several states, including Georgia, are weighing or have passed bills that would protect access to IVF after Alabama’s state Supreme Court ruled that embryos created through IVF should be considered children, leading to temporary suspension of those services. Zemmie Fleck, executive director of Georgia Right to Life, said the Georgia anti-abortion bill would not make IVF illegal.

This fissure in Trump’s base over protecting versus restricting or even prohibiting IVF has raised questions about how his executive order will play out. Letourneau of Utah said some of his patients have asked if the order will cover their treatment costs.

The White House did not respond to requests for comment.

An Uncertain Road Ahead

While a growing number of companies provide IVF coverage as a health benefit, most patients are left to find ways to pay on their own. Some have turned to loans — IVF financing startups such as Gaia and Future Family have raised millions in venture funding.

The Freschis have applied for grants, are crowdfunding, and have put their upcoming cycle on a credit card.

“It’s so scary,” said Freschi, describing worries about potential unexpected IVF costs. “It just feels like you’re constantly walking around with a weight on you.”

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

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

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When the Trump administration cut more than $11 billion in covid-era funds to states in late March, addiction recovery programs suffered swift losses.

An Indiana organization that employs people in recovery to help peers with substance use disorders and mental illness was forced to lay off three workers. A Texas digital support service for people with addiction and mental illness prepared to shutter its 24/7 call line within a week. A Minnesota program focused on addiction in the East African community curtailed its outreach to vulnerable people on the street.

Although the federal assistance was awarded during the covid-19 pandemic and some of the funds supported activities related to infectious disease, a sizable chunk went to programs on mental health and addiction. The latter are both chronic concerns in the U.S. that were exacerbated during the pandemic and continue to affect millions of Americans. Colorado, for example, received more than $30 million for such programs and Minnesota received nearly $28 million, according to health and human services agencies in those states.

In many cases, this money flowed to addiction recovery services, which go beyond traditional treatment to help people with substance use disorders rebuild their lives. These programs do things that insurers often don’t reimburse, such as driving people to medical appointments and court hearings, crafting résumés and training them for new jobs, finding them housing, and helping them build social connections unrelated to drugs.

A federal judge temporarily blocked the Trump administration’s cuts, allowing the programs to continue — for now — receiving federal funding. But many of the affected programs say they can’t easily rehire people they laid off or resurrect services they curtailed. And they’re unsure they can survive long-term amid an environment of uncertainty and fear, not knowing when the judge’s ruling might be lifted or another funding source cut.

The week it slashed the funding, the Trump administration also announced a massive reorganization of the Department of Health and Human Services, including the consolidation of the main federal agency focused on addiction recovery services. Without a stand-alone office like the Substance Abuse and Mental Health Services Administration, many advocates worry, recovery work — and the funding to support it — will no longer be a priority. Although private foundations and state governments may step in, it’s unlikely they could match the tranches of federal funding.

“Recovery support is treated as optional,” said Racquel Garcia, founder of HardBeauty, a Colorado-based addiction recovery organization.

The federal cuts put at risk a roughly $75,000 grant her team had received to care for pregnant women with substance use disorders in two rural counties in Colorado.

“It’s very easy to make sweeping decisions from the top in the name of money, when you don’t have to be the one to tell the mom, ‘We can’t show up today,’” Garcia said. “When you never have to sit in front of the mama who really needed us to be there.”

Mental health conditions, including substance use disorders, are a leading cause of maternal mortality in the U.S. And although national overdose deaths have decreased recently, rates have risen in many Black and Native American communities. Many people in the addiction field worry these funding rollbacks could reverse hard-earned progress.

U.S. Department of Health and Human Services spokesperson Emily Hilliard told KFF Health News that the department is reorganizing to improve efficiency, foster a more coordinated approach to addiction, and prioritize funding projects that align with the president’s Make America Healthy Again initiative.

“We aim to streamline resources and eliminate redundancies, ensuring that essential mental health and substance use disorder services are delivered more effectively,” she said in a statement.

But to Garcia, it doesn’t feel like streamlining. It feels like abandoning moms in need.

Between the time the cuts were announced and when the federal judge paused them, two women served by Garcia’s program gave birth, she said. Though her grant funding was in limbo, Garcia told her employee to show up at the bedside for both moms. The employee followed up with daily check-ins for the new moms, connected them to treatment or housing services when needed, and helped them navigate the child services system.

“I just can’t leave moms” without services, Garcia said. “I just can’t do it.”

Nor can she abandon that employee, she said. Although the federal funding provided half of that employee’s salary, Garcia has continued to keep her on full time.

Garcia said she primarily employs women in recovery, many of whom spent years trapped in abusive situations, relying on welfare benefits. Now they’re sober and have found meaningful work that allows them to provide for their families, she said. “We created our own workforce of mamas who help other mamas.”

This type of recovery workforce development seems to align with the Republican Party’s goals of getting more people to work and reducing reliance on welfare benefits. The Trump administration’s drug policy priorities, released in early April, identified creating “a skilled, recovery-ready workforce” and strengthening peer recovery support services as crucial efforts to help people “find recovery and lead productive, healthy lives.” Many recovery programs train people for blue-collar jobs, which could support Trump’s goal of reviving the manufacturing industry.

But the administration’s actions appear to conflict with its stated goals, said Rahul Gupta, the nation’s drug czar during the Biden administration.

“You can’t have manufacturing if people can’t pass a urine drug test or continue to suffer from addiction or relapse,” said Gupta, who is now president of GATC Health, a company using artificial intelligence for drug development.

Even if jobs return to rural America, cutting funding for recovery services and the main federal office overseeing such efforts could mean fewer people are employable, Gupta said.

Research on recovery programs, particularly those run by people with personal addiction experience, suggests they can increase engagement in court-ordered treatment, reduce the prevalence of rearrest, bolster attendance at treatment appointments, and improve the likelihood of families reunifying and stabilizing.

Billy O’Bryan sees these benefits daily. As a state director for the national nonprofit Young People in Recovery, O’Bryan oversees about a dozen chapters in Kentucky that teach people in recovery life skills, such as balancing a checkbook and interviewing for jobs, and show them how to have fun in sobriety, through group hikes and glow-in-the-dark Ultimate Frisbee games.

Providing recovery services “is when we really invest in their future,” said O’Bryan, who is in recovery too.

Six of his chapters were affected by the federal funding cuts. That has meant dipping into his organization’s rainy day fund to pay staff and cutting back on community events, including cleanup days in which chapter members gather used syringes off the street, pass out the overdose reversal medication naloxone, and talk to people using drugs about the possibility of recovery.

He’s exploring fundraising efforts now, but not all his chapters have the same ability.

“In a city like Louisville, fundraising is not a problem,” O’Bryan said, “but when you get out into Grayson, Kentucky” — a rural area in the Appalachian Mountains — “there’s not a lot of opportunities.”

In Minnesota, Kaleab Woldegiorgis and his colleagues at Niyyah Recovery Initiative used to spend hours a day at soup kitchens, community events, mosques, and on the streets of East African and Muslim neighborhoods, trying to connect with people using drugs. They spoke Somali, Amharic, and Swahili, among other languages.

Those outreach efforts allowed them to “find individuals in need of recovery services” who “weren’t seeking it out themselves,” said Woldegiorgis, who previously attended Niyyah’s support groups when he was dealing with addiction.

After building relationships with people, Woldegiorgis could help them connect with formal recovery services that bill their insurance, he said. But help couldn’t always wait for a contract.

One afternoon shortly before the federal funding cuts, Woldegiorgis and his colleagues spoke with a man who began weeping, recounting how he had wanted to get treatment a few days earlier but had lost his belongings, returned to using drugs, and ended up on the street. Woldegiorgis said he helped the man reconnect with a sister and begin exploring treatment options.

With the federal funding cuts, Niyyah may no longer be able to support this type of outreach work. Woldegiorgis fears it means people won’t receive the message of hope that can come from interacting with role models in recovery.

“People don’t pick up pamphlets to receive these messages. And people don’t read emails and people don’t look at billboards and find inspiration,” he said. “People need people.”

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 Joint Task Force issues a statement regarding Yale University's response to antisemitism and on-campus events.

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

Congress returns from spring break next week and will get to work crafting a bill that would cut taxes and boost immigration enforcement — but that also could cut at least $880 billion over the next decade from a pool of funding that includes Medicaid. Some Republicans, however, are starting to question the political wisdom of making such large cuts to a program that provides health coverage to so many of their constituents.

Meanwhile, the Supreme Court heard arguments in a case challenging the requirement that most private insurance cover certain preventive services with no out-of-pocket cost for patients.

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

Panelists Sarah Karlin-Smith Pink Sheet @SarahKarlin Read Sarah's stories. Tami Luhby CNN @Luhby Read Tami's stories. Alice Miranda Ollstein Politico @AliceOllstein Read Alice's stories.

Among the takeaways from this week’s episode:

• On the hunt for ways to pay for an extension of President Donald Trump’s tax cuts, many congressional Republicans are choosing their words carefully as they describe potential cuts to Medicaid — cuts that, considering heavy reliance on the program, especially in red states, could be politically unpopular.
• Amid the buzz over Medicaid cuts, another federal program that helps millions of Americans afford health care is also on the chopping block: the enhanced government subsidies introduced under the Biden administration that help pay premiums for Affordable Care Act plans. The subsidies expire at the end of this year, and Congress has yet to address extending them.
• One little-discussed option for achieving deep government spending cuts is Medicare Advantage, the private alternative to traditional Medicare that offers a variety of extra benefits for those over 65 — but that also costs the federal government a bundle. Even Mehmet Oz, the new head of the Centers for Medicare & Medicaid Services who once pushed Medicare Advantage plans as a TV personality, has cast sidelong glances at private insurers over how much they charge the government.
• And the Supreme Court heard oral arguments this week in a case that challenges the U.S. Preventive Services Task Force and could hold major implications for preventive care coverage nationwide. The justices’ questioning suggests the court could side with the government and preserve the task force’s authority — though that decision would also give more power over preventive care to Robert F. Kennedy Jr., the health and human services secretary.

Also this week, Rovner interviews KFF Health News’ Rae Ellen Bichell about her story on how care for transgender minors is changing in Colorado.

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

Julie Rovner: MedPage Today’s “Medical Journals Get Letters From DOJ,” by Kristina Fiore.

Sarah Karlin-Smith: The Tampa Bay Times’ “Countering DeSantis, $10M Hope Florida Donation Came From Medicaid, Draft Shows,” by Alexandra Glorioso and Lawrence Mower.

Tami Luhby: Stat’s “In Ireland, a Global Hub for the Pharma Industry, Trump Tariffs Are a Source of Deep Worry,” by Andrew Joseph.

Alice Miranda Ollstein: The New York Times’ “A Scientist Is Paid to Study Maple Syrup. He’s Also Paid to Promote It,” by Will Evans, Ellen Gabler, and Anjali Tsui.

Also mentioned in this week’s podcast:

• Stat’s “New England Journal of Medicine Gets Swept Up in U.S. Attorney Inquiry Into Alleged Bias,” by Anil Oza.
• KFF’s “KFF Tracking Poll on Health Information and Trust: The Public’s Views on Measles Outbreaks and Misinformation,” by Alex Montero, Grace Sparks, Julian Montalvo III, Ashley Kirzinger, and Liz Hamel.
• Bloomberg News’ “Food Industry Says There’s No Agreement With US Health Agency to Cut Dyes,” by Rachel Cohrs Zhang.
• Politico’s “RFK Jr. Eyes Reversing CDC’s Covid-19 Vaccine Recommendation for Children,” by Adam Cancryn.
• The New Yorker’s “The Cost of Defunding Harvard,” by Atul Gawande.
• The Wall Street Journal’s “Trump’s FDA Sends a Bullish Signal to Biotech,” by David Wainer

Credits Francis Ying Audio producer Emmarie Huetteman Editor

To hear all our podcasts, click here.

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

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

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Tiene 17 años y vive en los suburbios de Chicago. Ama el teatro y hace poco ayudó a dirigir una obra en su escuela secundaria. Toma cursos avanzados y está trabajando en su proyecto para ser Eagle Scout.

Y ha estado en proceso de transición durante cuatro años.

Una vez por semana, este adolescente trans se inyecta testosterona. Ha congelado sus óvulos por si algún día quiere tener hijos biológicos.

Conversó con sus padres y con su psicóloga y decidió que estaba listo para el siguiente paso en su tratamiento: una cirugía en su pecho para remover tejido mamario.

“Recibir este tratamiento no es arreglar algo que esté mal en mí”, dijo el adolescente. “Solo me está ayudando a convertirme más en la persona que quiero ser y con la que me siento más cómodo, más a gusto”.

En este artículo, KFF Health News y NPR no revelan su nombre ni el apellido de su madre por temor a que puedan ser blanco de ataques por su identidad de género.

La madre del adolescente, Jane, esperaba una llamada para programar la cirugía de su hijo en el Ann & Robert H. Lurie Children’s Hospital of Chicago. Pero lo que recibió fue un mensaje de voz del hospital. Jane aseguró que sabía lo que diría, incluso antes de escucharlo: la cirugía no se iba a realizar.

Ya había leído en redes sociales que, luego de una orden ejecutiva del presidente Donald Trump, el hospital ubicado cerca del centro de Chicago, había decidido suspender las cirugías de afirmación de género en menores de 19 años

Jane llamó al hospital para confirmar que las cirugías estaban suspendidas y se lo dijo a su hijo ese mismo día, cuando llegó de la escuela.

“Le dije: ‘Vamos a cuidarte. Vamos a superar esto’”, contó Jane. “Pero fue devastador”.

“Estamos siendo amenazados”, afirmó Jane. “La comunidad trans está siendo amenazada, y los padres también”.

Su hijo le dijo que se siente herido y confundido. En noviembre, después que Trump fuera elegido, sus médicos le habían asegurado que, dentro de la legalidad, lucharían con todas sus fuerzas para apoyarlo, recordó.

Pero los directivos del Lurie decidieron cancelar las cirugías pendientes y dejar de programar otras nuevas.

“Sé que no es algo personal, sé que no me miraron directamente a mí y me dijeron: ‘Sí, no te lo mereces’”, dijo el muchacho. “Pero a veces lo siento así, sobre todo cuando veo el sentimiento general hacia las personas trans en la sociedad”.

El 7 de febrero un vocero del hospital confirmó que se pausarían las cirugías de afirmación de género.

En el área de Chicago, KFF Health News y NPR hablaron con diez pacientes o con sus padres sobre cómo este cambio afectaba sus vidas.

Todos describieron su decepción, su pérdida de esperanza de tener la cirugía algún día, y su enojo por el momento en que se produce, cuando ya se sienten amenazados y marginados por la retórica de odio que se respira en todo el país.

Estas familias temen que, con el tiempo, también se les niegue el acceso a toda la atención sanitaria relacionada con la reafirmación de género, como la terapia, los bloqueadores de la pubertad y las hormonas.

También se preguntan por qué los funcionarios de Illinois, que se habían comprometido a proteger los derechos de las personas transgénero, no han dicho nada sobre lo que está sucediendo en el Lurie Children’s y en otros lugares.

El Northwestern Memorial Hospital de Chicago también ha dejado de realizar estas cirugías a menores, según informaron las familias a KFF Health News y NPR.

La decisión del Lurie Children’s se produjo después que la orden ejecutiva de Trump del 28 de enero amenazara con recortar los fondos federales a los proveedores que ofrecieran atención médica de afirmación de género.

“En todo el país, los profesionales médicos están mutilando y esterilizando a un número cada vez mayor de niños influenciables bajo la afirmación radical y falsa de que los adultos pueden cambiar el sexo de un niño mediante una serie de intervenciones médicas irreversibles”, sentencia la orden de Trump. “Esta peligrosa tendencia será una mancha en la historia de nuestra nación y debe terminar”.

Otro paciente, un joven de 16 años de Chicago, tenía fecha para una doble mastectomía, hasta que el Lurie Children’s la canceló. KFF Health News y NPR tampoco revelan su identidad porque el joven teme por su seguridad personal.

El adolescente contó que se sintió traicionado por la cancelación. Lleva más de cinco años vendándose el pecho, lo que le causa dolor en las costillas y la espalda.

Cada mañana se enfrenta a una elección: vendarse el pecho para “pasar” completamente por hombre, o no hacerlo y vivir un día sin dolor. Evita los deportes porque no puede respirar bien cuando tiene el pecho vendado. Gran parte de su disforia de género se centra en tener pechos, dijo.

El Lurie Children’s consideró que la cirugía del adolescente era “médicamente necesaria”, según los documentos que su familia compartió con KFF Health News y NPR.

“La decisión de Lurie sentó un precedente no solo para otros proveedores de atención médica, sino también para sus pacientes”, dijo el adolescente. “El hospital ha demostrado que ya no es el refugio seguro que han afirmado ser durante tantos años”.

Muchos de los pacientes de Lurie Children’s fueron derivados al Northwestern Memorial Hospital, un destacado hospital de investigación cercano, para tener sus cirugías. Pero sus citas iniciales en Northwestern fueron canceladas posteriormente. Un vocero de la institución rechazó responder a los repetidos pedidos de comentarios.

A los padres cuyos hijos transgénero reciben otros tratamientos médicos en Lurie Children’s, como terapia hormonal, les preocupa que el hospital también deje de proporcionar esos servicios en el futuro.

“Si no podemos conseguir estrógenos en un año, ¿qué haremos?”, se pregunta la madre de una niña transgénero de 15 años. KFF Health News y NPR tampoco revelan su nombre por el mismo temor que los otros. “Los padres que tienen recursos para hacerlo están discutiendo la posibilidad de marcharse del país”, afirma.

La política de suspender las cirugías

En un comunicado, el doctor Robert Garofalo aseguró que escucha y comprende la frustración de los pacientes y de sus familias. Es el director y fundador del Gender Development Program del Lurie Children’s.

“He dedicado mi vida a estos niños, adolescentes y sus familias”, afirmó Garofalo. “Como alguien que ha pasado toda su trayectoria profesional en el Lurie Children’s, puedo asegurarles que los jóvenes y sus familias son fundamentales para esta institución. Es muy importante que dejemos en claro que esta decisión ha sido muy difícil y se ha tomado en circunstancias sin precedentes y bajo presiones externas”.

Garofalo escribió que la decisión de pausar las cirugías se basó en la creencia del hospital de que de ese modo podría ayudar a salvaguardar la mayoría de los servicios clínicos que ofrece este programa.

Los investigadores han comprobado que las cirugías entre los jóvenes trans son poco frecuentes.

Luego de la orden ejecutiva de Trump, el fiscal general de Illinois, Kwame Raoul, y 14 de sus pares de otros estados se comprometieron a proteger el acceso al tratamiento.

En un comunicado, Raoul afirmó que la Ley de Derechos Humanos de Illinois prohíbe a los proveedores de atención médica discriminar a los pacientes por su identidad de género.

Sin embargo, recientemente el fiscal declaró a KFF Health News y NPR que sería difícil sostener que Lurie y Northwestern están infringiendo la ley estatal.

“No considero que Lurie o Northwestern sean los malos de la película”, afirmó Raoul, demócrata, tras un acto celebrado el 1 de abril en un restaurante cerca del centro de Chicago. Allí, Raoul le pidió a una sala repleta de líderes cívicos que se opusieran a las intimidaciones de la Casa Blanca.

Raoul opinó que la decisión de los hospitales no puede considerarse discriminación, “cuando el Gobierno federal te apunta con una pistola a la cabeza”.

Cuando KFF Health News y NPR le preguntaron el gobernador demócrata JB Pritzker si el Lurie Children’s estaba infringiendo la Ley de Derechos Humanos, el centro no respondió. Pero sí dijo que los hospitales están siendo “chantajeados” para limitar la atención.

“No es culpa de los hospitales”, afirmó categóricamente Pritzker. “Créanme. Conozco a la gente del Lurie Children’s Hospital, conozco a la gente que dirige la mayoría de estos hospitales y puedo decirles que quieren hacer lo correcto por sus pacientes”.

A pesar de que jueces federales han emitido sentencias que bloquean la orden ejecutiva de Trump, el Lurie Children’s y hospitales de todo el país han suspendido las cirugías y otros tipos de tratamientos de afirmación de género

Un hospital que enfrenta un futuro legal incierto

El Lurie Children’s Hospital tiene uno de los programas médicos de afirmación de género más antiguos del país, lanzado en 2013, y todavía ofrece terapia hormonal, bloqueadores de la pubertad y servicios de salud conductual.

Los proveedores de servicios médicos, los pacientes y sus padres aluden frecuentemente a las numerosas investigaciones que subrayan el papel crucial e incluso la capacidad de salvar vidas que puede tener la atención médica transgénero. Por ejemplo, ayudando a disminuir la depresión y la ansiedad.

El acceso a la afirmación médica de género cuenta con el aval de la American Academy of Pediatrics (Asociación Americana de Pediatría) y la American Medical Association (Asociación Médica Americana).

La comunidad transgénero es pequeña y las familias sienten que esa es una de las razones por las que son atacados.

En 2023, alrededor del 3% de los estudiantes de escuela secundaria en el país se identificaron como transgénero, y un 2% adicional declaró que estaba cuestionando su identidad de género, según un estudio de los Centros para el Control y la Prevención de Enfermedades (CDC).

Los jóvenes transgénero experimentan más violencia, acoso y pensamientos suicidas que sus compañeros no trans, afirma el estudio de los CDC que agrega que, en el último año, aproximadamente 1 de cada 4 estudiantes que eran transgénero o cuestionaban su identidad de género intentó suicidarse.

En los últimos años, muchos estados han intensificado las restricciones en el acceso de los menores a la atención de afirmación de género, informó KFF, una organización sin fines de lucro de información sobre salud que incluye a KFF Health News.

Un poco más de la mitad del país —27 estados— prohíbe o dificulta el acceso a esos tratamientos. Recientemente, Iowa dio un nuevo paso en esa dirección al eliminar las protecciones de derechos civiles para las personas trans o no binarias.

Elizabeth Mack, médica especialista en cuidados intensivos pediátricos en Carolina del Sur, ha sido testigo de las consecuencias de esa prohibición en su estado. Ha tratado a varios niños que intentaron suicidarse o murieron por suicidio porque no pudieron acceder al tratamiento, según surgió de las entrevistas que mantuvo con los mismo pacientes o con sus familiares.

“Es una de esas situaciones que te dejan una marca que no olvidarás, imborrable”, dijo Mack sobre su experiencia.

Tuvo su cirugía, pero sigue preocupado

Ben García, de 18 años, estudiante de último curso de secundaria en Chicago, ofrece una visión de su vida después de la cirugía. En 2023, tuvo una doble mastectomía. Cree que sin la atención médica que ha recibido durante los últimos años, sería una persona diferente, probablemente más retraída y con menos confianza en sí mismo.

“Esta atención me ha permitido sentirme mucho más cómodo con quien soy y con la forma en que me presento ante el mundo”, explicó García.

García y su madre, Michelle Vallet, destacan que el camino hacia la cirugía fue un proceso lento, que se llevó a cabo con gran cuidado y mucha conversación.

Una vez que comenzó la pubertad, García empezó a tener dudas y quiso explorar qué significaría retrasar los cambios que se estaban produciendo en su cuerpo. En ese momento, tenía unos 10 u 11 años.

Vallet se puso en contacto con el Lurie Children’s Hospital y programó una primera cita para García. Contó que ese primer encuentro duró tres horas.

Según Vallet, gran parte de las personas malinterpreta el proceso, y los niños transgénero se han convertido en algunos de los pacientes bajo más escrutinio del país.

“Creo que la gente piensa que los niños trans se despiertan un día y dicen: ‘¡Quiero ser un niño!’”, dijo Vallet. “Entonces van a la clínica de género y, ¡pum! Así no es cómo funciona este tratamiento”.

Vallet, su hijo, y el personal médico del Lurie Children’s hablaron largamente sobre los riesgos del tratamiento, los posibles efectos secundarios y los siguientes pasos.

García se sometió a evaluaciones de salud mental en varias citas antes que pudiera tomar bloqueadores de la pubertad para evitar que su cuerpo experimentara cambios. Luego comenzó a recibir dosis bajas de la hormona testosterona. Poco a poco, su voz se volvió más grave y le creció vello facial.

El joven sigue recibiendo inyecciones de testosterona cada semana y va a revisiones en el Lurie Children’s para controlar sus niveles hormonales. Ahora lo preocupa que esta atención también se vea afectada. A su madre le inquieta que el hospital suspenda progresivamente todo tipo de atención para la reafirmación de género.

“Es desgarrador ver que hospitales tan grandes como el Lurie obedecen por adelantado”, dijo Vallet, refiriéndose a la orden ejecutiva de Trump que amenaza con retirar los fondos federales que reciben los hospitales. “Se siente como una traición. … Hay dinero federal en juego, pero en un momento dado, en la situación en la que nos encontramos, hay que decir: ’No, no voy a hacerlo”’.

El joven de 17 años que vive en los suburbios y nunca consiguió una fecha para la cirugía, está esperando respuesta de otros hospitales. Tiene una cita preliminar con un hospital en mayo, pero hay lista de espera. Probablemente pasarán meses antes que pueda operarse.

Está convencido de que la atención médica que ya ha recibido le ha salvado la vida y le ha dado esperanzas para el futuro. Piensa en estudiar Medicina en la universidad, inspirado por la atención que recibió durante todo este proceso.

Su madre, Jane, dice que el muchacho está saliendo adelante.

“Estoy muy orgullosa de él, porque todo lo que dice y hace tiene sentido”, dijo mientras su hijo explicaba todo lo que implica poder operarse. “Tiene claridad, y la gente lo está escuchando, lo entiende, y le está proporcionando lo que necesita para vivir”.

Este artículo es parte de una alianza que incluye a WBEZ, NPR, y 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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This story can be republished for free (details).

He’s 17 and lives in the Chicago suburbs. He loves theater and recently helped direct a play at his high school. He takes competitive AP courses and is working on his Eagle Scout project.

And he’s been on a journey for four years.

Once a week, the transgender teen injects testosterone into his body. He’s had his eggs frozen in case he wants to have his own biological children one day. He talked with his parents and his psychologist and decided he was ready for the next step of treatment: top surgery to remove breast tissue.

“Getting this treatment isn’t fixing something that’s wrong with me,” the teen said. “It’s just helping me grow more into who I want to be and who I can feel most comfortable existing as.”

KFF Health News and NPR are not identifying the teen by name or using his mother’s last name because both are concerned he could be targeted for being transgender.

The teen’s mom, Jane, waited for a call to schedule the surgery at Ann & Robert H. Lurie Children’s Hospital of Chicago. Then, she received a voicemail from the hospital. She said she knew what the message would be even before she listened to it: The surgery wouldn’t happen.

She had already read on social media that Lurie Children’s, located near downtown Chicago, would pause gender-affirming surgeries for people younger than 19 in the wake of an executive order from President Donald Trump.

Jane called Lurie back to confirm that surgeries were on hold, then told her son when he got home from school that day.

“I said, ‘Hey, we are going to take care of you,'” she recalled. “‘We will make it through this.'”

It was devastating, Jane said.

“We are being threatened,” she said. “The trans community is being threatened, and parents are being threatened.”

Her son said he feels hurt and confused. His doctors told him after Trump was elected in November that they would fight as hard as they legally could to support him, he recalled. But then Lurie’s leaders decided to cancel pending surgeries and stop scheduling new ones.

“I know that it’s not like a personal thing, like they didn’t look at me directly and go, ‘Yeah, you don’t deserve that,'” the teen said. “But it kind of feels like it sometimes, especially when a lot of what the sentiment has been, in general, towards trans people in society.”

On Feb. 7, a Lurie Children’s spokesperson confirmed the hospital would pause gender-affirming surgeries.

KFF Health News and NPR spoke with 10 patients or their parents in the Chicago area about how this affects their lives. They described their disappointment, their loss of hope for one day having a procedure, and their anger at the timing, when they already feel threatened and marginalized by hateful rhetoric around the country.

These families fear that they eventually could lose access to all gender-affirming care, such as therapy, puberty blockers, and hormones. They’ve also questioned why Illinois officials who have vowed to protect transgender rights have been quiet on what’s happening at Lurie Children’s and elsewhere. Northwestern Memorial Hospital in Chicago has also stopped such surgeries for minors, families told KFF Health News and NPR.

Lurie Children’s decision came after Trump’s executive order on Jan. 28 threatened to cut federal funding to health care providers offering gender-affirming medical care.

“Across the country today, medical professionals are maiming and sterilizing a growing number of impressionable children under the radical and false claim that adults can change a child’s sex through a series of irreversible medical interventions,” according to Trump’s order. “This dangerous trend will be a stain on our Nation’s history, and it must end.”

Another patient, a 16-year-old boy from Chicago, had a surgery date for a double mastectomy procedure — until Lurie Children’s canceled it. KFF Health News and NPR are not identifying him because he fears for his personal safety.

The teen felt betrayed by the cancellation, he said. He has been binding his chest for more than five years, but doing so causes rib and back pain.

Every morning, he faces a choice: bind his chest to fully “pass” as male, or skip that and experience a day without pain. He avoids sports because he can’t breathe as well when his chest is bound. A large part of his gender dysphoria is centered on having breasts, he said.

Lurie Children’s deemed the teen’s surgery “medically necessary,” according to medical documents his family shared with KFF Health News and NPR.

“Lurie’s decision set a precedent not only for other care providers but also for their patients,” said the teen. “They have established that they are no longer the safe haven they have claimed to be for so many years.”

Many of Lurie Children’s patients were referred for surgery to Northwestern Memorial Hospital, a prominent research hospital nearby. Their initial Northwestern appointments were later canceled. A Northwestern spokesperson declined repeated requests to comment.

Parents whose transgender children are receiving other types of medical care at Lurie Children’s, such as hormone therapy, worry about what the hospital might stop providing next.

“If we can’t get estrogen in a year, what do we do?” says the mother of a 15-year-old transgender girl. KFF Health News and NPR are not naming her because she fears retaliation against her daughter if she is identified. “Parents with means are talking about leaving the country.”

The Politics of Pausing Surgeries

In a statement, physician Robert Garofalo said he hears and understands the frustration. He is the founding director of the Gender Development Program at Lurie Children’s.

“My life’s work has been devoted to these children, adolescents, and their families,” Garofalo wrote. “As someone who has spent his entire career at Lurie Children’s, I can assure you these kids and these families matter to this institution. It’s important to know that this decision was painstakingly difficult, and it was made amid unprecedented circumstances and external pressures.”

The hospital’s decision, Garofalo wrote, was based on the belief it could help safeguard most of the clinical services offered by his program.

Surgery among trans youth is rare, researchers have found.

After Trump’s executive order, Illinois Attorney General Kwame Raoul and 14 of his peers in other states vowed to protect access to treatment. In a statement, Raoul said the Illinois Human Rights Act prohibits health care providers from discriminating against patients because of their gender identity.

But recently he told KFF Health News and NPR that it would be hard to make a case that Lurie and Northwestern are violating state law.

“I don’t look at Lurie or Northwestern as a bad actor here,” Raoul, a Democrat, said after an event on April 1, at which he told a packed room of civic leaders in a restaurant near downtown Chicago to stand up against intimidation by the White House. It’s not discrimination, Raoul said, “when the federal government is holding a gun to your head.”

When KFF Health News and NPR asked whether Lurie Children’s is violating the Human Rights Act, Democratic Gov. JB Pritzker didn’t answer. But he did say hospitals are being “blackmailed” into limiting care.

“This is not the hospitals’ fault,” Pritzker said. “Believe me. I know the people at Lurie Children’s Hospital, I know the people who run most of these hospitals, and I can tell you that they want to do the right thing for their patients.”

Lurie Children’s and some hospitals across the country have paused surgeries or other types of gender-affirming treatment despite federal judges who issued rulings blocking Trump’s order.

A Hospital Confronts an Uncertain Legal Future

Lurie Children’s has one of the oldest gender-affirming care programs in the country, launched in 2013, and still offers hormone therapy, puberty blockers, and behavioral health services.

Medical providers, patients, and parents point to research that underscores the crucial and even lifesaving role that transgender medical care can provide, such as helping decrease depression and anxiety. Access to gender-affirming care is supported by the American Academy of Pediatrics and the American Medical Association.

The transgender community is small, and families say they feel targeted because of this. In 2023, around 3% of high school students in the U.S. identified as transgender, and an additional 2% identified as questioning, according to a 2023 study from the federal Centers for Disease Control and Prevention.

Transgender youths experience more violence, bullying, and suicidal thoughts than their non-trans peers, the CDC study found. About 1 in 4 students who were transgender or questioned their gender identity attempted suicide in the past year, the study found.

In recent years, many states have cracked down on access to gender-affirming care for minors, according to KFF, a health information nonprofit that includes KFF Health News. Just over half the country — 27 states — ban or restrict access. Recently, Iowa took the step of stripping civil rights protections from people who are trans or nonbinary.

Elizabeth Mack, a pediatric critical care physician in South Carolina, has witnessed the consequences of a ban in her state. She has treated several children who attempted suicide or died by suicide because they couldn’t access treatment, according to conversations she had with the patients or family members.

“It’s just one of those things that leaves a mark that I can’t unsee,” Mack said of her experience.

This Teen Already Had His Surgery but Still Worries

Ben Garcia, 18, a Chicago high school senior, offers a glimpse into life post-surgery. In 2023, he had a double mastectomy. He believes that without the medical care he’s received for the past several years, he would be a different person, likely more withdrawn and less confident.

“This care has allowed me to be a lot more comfortable in who I am, in the way that I present myself to the world,” Garcia said.

Garcia and his mother, Michelle Vallet, emphasized that his path to surgery was a slow process that proceeded with care and deliberation. Once puberty started, Garcia started to have questions and wanted to explore what it would mean to delay the changes occurring in his body. At that time, he was around 10 or 11 years old.

Vallet reached out to Lurie Children’s Hospital and booked a first appointment for Garcia. It lasted three hours, she said.

Much of the public misunderstands the process, Vallet said, and transgender kids have become some of the most scrutinized patients in America.

“I think they feel like trans kids are just one day waking up saying, ‘I want to be a boy,'” Vallet said. “They go to the gender clinic, wham bam. That’s not how this care happens.”

She, her son, and the medical staff at Lurie Children’s talked through the risks of treatment, the possible side effects, and the next steps.

Garcia went through mental health evaluations over multiple appointments before he could take puberty blockers to stop his body from going through changes. Then he started taking low doses of testosterone, a hormone. Gradually, his voice dropped, and he grew facial hair.

Garcia still takes testosterone shots every week and gets checkups at Lurie Children’s to monitor his hormone levels. He’s now nervous this care could also be affected. His mother is worried that the hospital might suspend all types of gender-affirming care.

“It’s heartbreaking to see hospitals as big as Lurie comply in advance,” Vallet said, referring to the executive order’s threats to cut hospital payments. “It feels like a betrayal. … There’s federal dollars on the line, but at a certain point in the environment we’re in, you have to say, ‘No, I’m not doing this.'”

The suburban 17-year-old who never got a surgery date is waiting to hear back from other hospitals. He has a preliminary appointment booked at one hospital in May, but there’s a waitlist. Surgery is likely months away.

He’s convinced that the medical care he’s already received has saved his life and given him hope for his future. He thinks about studying medicine in college, inspired by the care he’s received.

His mom, Jane, said he’s thriving.

“I’m really proud of him, because he just makes sense,” Jane said as her son described all that’s involved in being able to have surgery. “He makes sense, and people are listening to him make sense and giving him what he needs to exist.”

This article is from a partnership that includes WBEZ, 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.

USE OUR CONTENT

This story can be republished for free (details).

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