“I heard one officer say about us ‘they smell like sh–,’” one detained person recounted in a federal court filing. “And another officer responded, ‘They are sh–.’”

Attorneys for immigrant children collected these stories, and more, from youth and families detained in what they called “prison-like” settings across the U.S. from March through June, even as the Trump administration has requested a federal district court judge terminate existing protections that mandate basic rights and services — including safe and sanitary conditions — for children held by the government.

The administration argues that the protections mandated under what is known as the Flores Settlement Agreement encourage immigration and interfere with its ability to establish immigration policy. U.S. District Court Judge Dolly Gee, who is in California, is expected to issue a ruling on the request after an Aug. 8 hearing.

With the agreement in place, children are being held in “unsafe and unsanitary” U.S. Customs and Border Protection facilities such as tents, airports, and offices for up to several weeks despite the agency’s written policy saying people generally should not be held in its custody longer than , according to the from immigrants’ attorneys. In the U.S. Department of Justice’s May request to terminate the Flores consent decree, the attorneys demanded more monitoring for children in immigration detention.

“The biggest fear is that without Flores, we will lose a crucial line of transparency and accountability,” said , executive director of the California-based Center for Human Rights and Constitutional Law. “Then you have a perfect storm for the abuse of individuals, the violation of their rights, and the kind of treatment that this country doesn’t stand for.”

The has set minimum standards and oversight for detained immigrant children since 1997, when it brought an end to a decade-long lawsuit filed on behalf of unaccompanied immigrant minors who had been subjected to poor treatment in unsafe and unsanitary conditions without access to medical care. It is named for Jenny Lisette Flores, a 15-year-old from El Salvador who was taken into U.S. custody in the mid-1980s, subjected to strip searches, and housed alongside unrelated men.

The agreement established national standards for the protection of immigrant children detained by federal authorities, with requirements for safe and sanitary detention facilities, access to clean water, appropriate food, clothing, bedding, recreational and educational opportunities, sanitation, plus appropriate medical and mental health care. Children in immigrant detention range from infants to teens.

In 2015, Gee ruled that the agreement includes children accompanied by adults.

The Justice Department and the Department of Homeland Security, which includes both the Customs and Border Protection agency and Immigration and Customs Enforcement, declined to respond on the record to questions about the administration’s intent to end the Flores agreement or about the conditions in which kids are detained. In a , government attorneys argued, among other points, that the agreement improperly directs immigration decisions to the courts, not the White House. U.S. Attorney General Pam Bondi also that the Flores agreement has “incentivized illegal immigration,” and that Congress and federal agencies have resolved the problems Flores was designed to fix.

ICE detention facilities have the “highest standards,” Abigail Jackson, a White House spokesperson, said in an email to �鶹Ů�� Health News. “They are safe, clean, and hold illegal aliens who are awaiting final removal proceedings.”

Immigration lawyers and researchers have on the idea that the Flores agreement encourages migration, arguing that the conditions in people’s homelands are driving them to move.

Trump is not the first president to seek to modify, or end, the agreement.

In 2016, President Barack Obama’s administration unsuccessfully sought to exempt accompanied minors from the Flores agreement, arguing that an influx of immigrants from Central America had overwhelmed the system.

In 2019, following a , the first Trump administration announced it would replace Flores with new regulations to expand family detention and eliminate detention time limits. The courts rejected that plan, too.

In 2024, President Joe Biden’s administration successfully requested to remove the Department of Health and Human Services from the agreement after the Office of Refugee Resettlement incorporated some Flores standards into agency regulations.

Allegations of unsafe conditions under the agreement also predate this latest immigration crackdown under Trump. One court filing from 2019 said that attorneys visiting two Texas detention centers found at least 250 infants, children, and teens, some of whom had been held at the facility for nearly a month. “Children were filthy and wearing clothes covered in bodily fluids, including urine,” the filing said.

Seven children are while in federal custody from 2018 to 2019, according to media reports.

And in 2023, 8-year-old Anadith Danay Reyes Alvarez became while in Customs and Border Protection custody in Texas for nine days. Her parents had turned over medical records detailing the girl’s medical history, including diagnoses of sickle cell disease and congenital heart disease, upon their detention. Yet her mother’s repeated pleas for emergency medical care were ignored.

Her family filed a in May.

Advocates attributed the deaths partly to prolonged detention in increasingly crowded facilities and delayed medical care. Officials have said they and in the wake of the deaths.

But with the Trump administration’s unprecedented push to detain and deport migrants — including families — the threat to the health of children caught up in those sweeps is alarming child advocates.

“Very rarely do you have spikes in populations of detained folk that you don’t see a drastic decrease in the quality of their medical care,” said Daniel Hatoum, a senior supervising attorney at the , one of the groups that filed the wrongful death claim for Anadith’s family.

Recent reports from court-appointed monitors cite continued ; temperature extremes; recreational opportunities; and clothing; and an inability to dim lights to sleep.

Terminating the Flores agreement would remove all outside oversight of immigration detention facilities by court-ordered monitors and attorneys. The public would have to depend on the government for transparency about the conditions in which children are held.

“Our system requires that there be some oversight for government, not just the Department of Homeland Security, but in general,” Hatoum said. “We know that. So, I do not believe that DHS could police itself.”

In the months after Trump took office and the Elon Musk-led Department of Government Efficiency began cuts, DHS’ Office for Civil Rights and Civil Liberties, the Office of the Citizenship and Immigration Services Ombudsman, and the Office of the Immigration Detention Ombudsman, which were intended to add a layer of oversight. After a lawsuit, the Trump administration , but it is unclear how those offices have been affected by shifts in policy and cuts in staffing.

Leecia Welch, an attorney with the legal advocacy group , said the Flores agreement itself, or efforts to hold the government responsible for abiding by its requirements, are not rooted in partisan politics. She said she raised concerns about conditions during Biden’s administration, too.

“These are not political issues for me,” Welch said. “How does our country want to treat children? That’s it. It’s very simple. I’m not going to take it easy on any administration where children are being harmed in their care.”

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“Escuché a un oficial decir sobre nosotros: ‘huelen a mier–’, y otro agregó: ‘son mier–’”, contó una persona detenida en una declaración presentada ante un tribunal federal.

Entre marzo y junio, abogados de menores inmigrantes recopilaron estos testimonios, y otros de jóvenes y familias detenidas, en lo que describen entornos “con apariencia carcelaria” en distintos puntos de Estados Unidos.

Esto mientras el gobierno de Trump solicitaba a un juez federal poner fin a las protecciones vigentes que garantizan derechos y servicios básicos —como seguridad y condiciones higiénicas— para los niños bajo custodia del gobierno.

La administración argumenta que las protecciones establecidas en lo que se conoce como el Flores Settlement Agreement (el Acuerdo Flores) fomentan la inmigración e interfieren con su capacidad de implementar políticas migratorias. Se espera que la jueza Dolly Gee, del Tribunal de Distrito de Estados Unidos en California, emita una decisión luego de la audiencia del 8 de agosto.

Con el acuerdo aún vigente, los menores están siendo retenidos en instalaciones de la Oficina de Aduanas y Protección Fronteriza de Estados Unidos que “no son seguras ni higiénicas”, como carpas, aeropuertos y oficinas, durante semanas, a pesar que las reglas de la agencia indican que las personas no deben permanecer bajo su custodia más de , según presentada en junio por abogados de inmigrantes.

Además de del Departamento de Justicia de Estados Unidos para poner fin al Acuerdo Flores, los abogados exigieron mayor supervisión para los menores en detención migratoria.

“El mayor temor es que, sin Flores, perderemos una línea crucial de transparencia y rendición de cuentas”, dijo , director ejecutivo del Center for Human Rights and Constitutional Law, con sede en California. “Y entonces se da una tormenta perfecta para el abuso, la violación de derechos y el tipo de trato que este país no debería permitir”.

Desde 1997, el ha establecido estándares básicos y supervisión para la detención de menores inmigrantes, tras poner fin a una demanda que se extendió por una década en nombre de menores inmigrantes no acompañados a los que se maltrató, manteniéndolos en condiciones inseguras e insalubres, sin acceso a atención médica.

El acuerdo lleva el nombre de Jenny Lisette Flores, una adolescente de 15 años de El Salvador, quien fue detenida por las autoridades estadounidenses a mediados de los años 80, sometida a requisas, desnuda, y alojada junto a hombres adultos desconocidos para ella.

El acuerdo estableció normas nacionales para la protección de menores inmigrantes bajo custodia federal, incluyendo el requerimiento de condiciones seguras y sanitarias en los centros de detención, acceso a agua potable, alimentación adecuada, ropa, cama, actividades recreativas y educativas, saneamiento, así como atención médica y de salud mental apropiadas.

Los menores en detención migratoria incluyen desde bebés hasta adolescentes.

En 2015, la jueza Gee dictaminó que el acuerdo también aplicaba a menores acompañados por adultos.

El Departamento de Justicia y el Departamento de Seguridad Nacional (DHS) —que incluye tanto a la Oficina de Aduanas y Protección Fronteriza como al Servicio de Inmigración y Control de Aduanas (ICE)— rechazaron responder públicamente a preguntas sobre la intención del gobierno de poner fin al Acuerdo Flores o sobre las condiciones en las que se encuentran los menores detenidos.

En de mayo, los abogados del gobierno argumentaron, entre otras cosas, que el acuerdo asigna indebidamente decisiones migratorias a los tribunales en lugar de a la Casa Blanca. La fiscal general Pam Bondi que el Acuerdo Flores ha “incentivado la inmigración ilegal”, y que el Congreso y las agencias federales ya resolvieron los problemas que Flores buscaba corregir.

Las instalaciones del ICE “tienen los estándares más altos”, dijo en un correo electrónico Abigail Jackson, vocera de la Casa Blanca. “Son seguras, limpias y albergan a extranjeros ilegales que están a la espera de los últimos procedimientos para ser removidos”.

Abogados de inmigración e investigadores de que el Acuerdo Flores fomente la migración, argumentando que las condiciones en los países de origen es lo que impulsa a las personas a migrar.

Trump no fue el primer presidente en intentar modificar o eliminar el acuerdo.

En 2016, el gobierno del presidente Barack Obama intentó, sin éxito, eximir del Acuerdo Flores a los menores acompañados, alegando que un aumento en la migración desde Centroamérica había saturado el sistema.

En 2019, luego de , el primer gobierno de Trump anunció que reemplazaría el Acuerdo Flores con nuevas regulaciones para ampliar la detención familiar y eliminar los límites de tiempo. Los tribunales también rechazaron ese plan.

En 2024, el gobierno del presidente Joe Biden logró excluir al Departamento de Salud y Servicios Humanos (HHS) del acuerdo, después que la Oficina de Reasentamiento de Refugiados adoptara algunos estándares de Flores en sus propias regulaciones.

Las denuncias sobre condiciones inseguras bajo el acuerdo son anteriores a la última ofensiva migratoria de Trump. Una declaración judicial de 2019 afirmó que abogados que visitaron dos centros de detención en Texas encontraron al menos a 250 menores —desde bebés hasta adolescentes— algunos de los cuales habían estado detenidos casi un mes. “Los niños estaban sucios y vestían ropa manchada con fluidos corporales, incluida orina”, decía la declaración.

Según informes de prensa, se sabe que al menos bajo custodia federal entre 2018 y 2019.

En 2023, Anadith Danay Reyes Álvarez, una niña de 8 años, luego de permanecer nueve días bajo custodia de la Oficina de Aduanas y Protección Fronteriza en Texas. Al momento de su detención, sus padres entregaron los expedientes médicos que documentaban su historial de enfermedades, incluyendo enfermedad de células falciformes y una afección cardíaca congénita,. Sin embargo, las repetidas súplicas de su madre para recibir atención médica de emergencia fueron ignoradas.

Su familia presentó por muerte por negligencia en mayo.

Defensores atribuyen las muertes, en parte, a la prolongada detención en centros cada vez más saturados y a demoras en la atención médica. Las autoridades han dicho que y tras las muertes.

Pero, con el esfuerzo sin precedentes del gobierno de Trump por detener y deportar migrantes —incluidas familias—, la amenaza para la salud de los menores atrapados en esas redadas alarma a los defensores de la infancia.

“Muy rara vez hay aumentos en la población detenida sin que se vea una disminución drástica en la calidad de la atención médica”, dijo Daniel Hatoum, abogado supervisor senior del , una de las organizaciones que presentó la demanda por la muerte de Anadith.

Informes recientes de supervisores designados por la corte señalan que persisten problemas como la , temperaturas extremas, de recreación al aire libre, , y la imposibilidad de apagar las luces para dormir.

Eliminar el Acuerdo Flores implicaría eliminar toda supervisión externa de los centros de detención migratoria por parte de monitores y abogados asignados por el tribunal. El público tendría que depender exclusivamente del gobierno para conocer las condiciones en que se encuentran los menores detenidos.

“Nuestro sistema requiere que haya algún tipo de supervisión del gobierno, no solo del Departamento de Seguridad Nacional, sino en general”, dijo Hatoum. “Sabemos eso. Así que no creo que el DHS pueda supervisarse a sí mismo”.

En los meses posteriores al regreso de Trump a la presidencia, y tras los recortes implementados por el Departamento de Eficiencia Gubernamental liderado por Elon Musk, la la Oficina de Derechos Civiles y Libertades Civiles del DHS, la Oficina del Defensor del Ciudadano para Servicios de Ciudadanía e Inmigración, y la Oficina del Defensor de la Detención Migratoria, que estaban destinadas a proporcionar una capa adicional de supervisión.

Luego de una demanda, el gobierno de Trump revirtió la decisión y anunció que las oficinas , aunque no está claro cómo han sido afectadas por los cambios de política y recortes de personal.

Leecia Welch, abogada del grupo legal , dijo que el Acuerdo Flores en sí, o los esfuerzos por exigir al gobierno que cumpla sus requisitos, no están motivados por ideologías políticas. También se expresaron preocupaciones sobre las condiciones en estas instalaciones durante la administración Biden.

“Para mí, estos no son asuntos políticos”, dijo Welch. “¿Cómo quiere nuestro país tratar a los niños? De eso se trata. Así de simple. No voy a tolerar que ningún gobierno dañe a niños bajo su cuidado”.

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Concerned onlookers called an ambulance. But Whitten instead had friends pick him up and take him to a nearby hospital, the Helen Diller Medical Center, operated by the University of California-San Francisco.

“I knew that ambulances were expensive, and I didn’t think I was going to die,” he said.

Whitten said doctors treated him for a mild concussion, a broken toe, and bruises.As he sat in a hospital bed, attached to an IV and wearing a neck brace, Whitten said, doctors told him that because he had suffered a traumatic injury, they had to send him by ambulance to the city’s only trauma center, Zuckerberg San Francisco General Hospital.

After a short ambulance ride, Whitten said, emergency room doctors checked him out, told him he had already received appropriate treatment, and released him.

Then the bill came.

The Medical Procedure

Traumatic injuries are those that threaten life or limb, and some facilities specialize in providing care for them. For someone hit by a car, that stabilizing vital signs, screening for internal injuries, and treating broken bones and concussions. Zuckerberg Hospital is a Level 1 trauma center, meaning it can provide any care needed for severely injured patients.

In emergency medicine, it is standard to transfer patients to centers best equipped to provide care. Ambulances are typically used for transfers because they are able to handle trauma patients, with tools to aid in resuscitation, immobilization, and life support.

At the first hospital, Whitten said, doctors performed a thorough workup, including a CT scan and X-rays, and advised him to follow up with his primary care physician and an orthopedic doctor. He was evaluated at the second hospital and released without additional treatment, he said.

The Final Bill

$12,872.99 for a 6-mile ambulance ride between hospitals: a $11,670.11 base rate, $737.16 for mileage, $314.45 for EKG monitoring, and $151.27 for “infection control.”

The Billing Problem: Surprise Bills Are Common With Ground Ambulances

Ground ambulance services are operated by a hodgepodge of private and public entities — with no uniform structure, or regulatory oversight, for billing — and most function outside insurance networks. Patients don’t typically have a choice of ambulance provider.

There are state and federal laws shielding patients from out-of-network ambulance bills, but none of those protections applied in Whitten’s case.

Whitten was insured under his father’s employer-sponsored health plan from Anthem Blue Cross. So when he received a nearly $13,000 bill months after his short transfer ride, he sent a photo of it to his dad.

Brian Whitten said the bills from the two hospitals — and the family’s out-of-pocket responsibility — were in line with what he had anticipated. But he was stunned by his son’s ambulance bill from AMR, one of the nation’s largest ambulance providers. Anthem Blue Cross denied the claim, saying the ambulance was out-of-network and required pre-authorization.

“It didn’t make a whole lot of sense to me, because the doctor is the one who put him in the ambulance,” Brian Whitten said. “It’s not like somehow he just decided, ‘Hey, can I take an ambulance ride?’”

Kristen Bole, a UCSF spokesperson, said in a statement that the health system’s standard of care is to stabilize patients and, when appropriate, transfer them to other medical facilities that are most appropriate to care for patients’ needs, adding that ambulance transfers between hospitals are standard practice.

While the medical system at large relies on negotiated prices for services, ambulance services operate largely outside of the competitive marketplace, said Patricia Kelmar, senior director of health care campaigns for PIRG, a nonpartisan consumer protection and good-government advocacy organization.

Ambulance transfers between hospitals to ensure the highest quality of care available are fairly common, Kelmar said. And with many hospitals being purchased and consolidated, it would follow that the number of ambulance transfers between facilities could increase as specialized medical units at any given hospital are downsized or eliminated, she said.

According to of private insurance claims data conducted in 2023, about 80% of ground ambulance rides resulted in out-of-network billing.

Generally, out-of-network providers may charge patients for the remainder of their bill after insurance pays. In some cases, patients can be on the hook even when they did not knowingly choose the out-of-network provider. These bills are known as “surprise” bills.

“It’s a financial burden, a significant financial burden,” said Kelmar, who is a member of the federal lawmakers on surprise bills and emergency ambulance transportation.

Eighteen states have implemented laws regulating surprise ambulance billing. A California law cracking down on surprise ambulance billing took effect on Jan. 1, 2024 — months after Jagdish Whitten’s ambulance ride.But Kelmar said those state laws don’t really help people with employer-sponsored insurance, because those plans are beyond state control — which is why federal legislation is so important, she said.

As of 2022, federal law protects patients from receiving some surprise bills, especially for emergency services. But while lawmakers included protections against air ambulance bills in the law, known as the , they .

The Resolution

Whitten’s father filed an insurance appeal on his son’s behalf, which Anthem granted. The insurer paid AMR $9,966.60.

Michael Bowman, a spokesperson for Anthem, said AMR had not submitted all the information it required to process the claim, leading to the initial denial. After consulting with AMR, Anthem paid its coverage amount, Bowman said.

But the insurer’s payment still left Whitten with a $2,906.39 bill for his out-of-network ambulance ride. Brian Whitten said he called an AMR customer service number several times to contest the remaining charges but was unable to bypass its automated system and speak with a human.

“I couldn’t find a way to talk to somebody about this bill other than how to pay it, and I didn’t want to pay it,” he said.

Unsuccessful and frustrated, Brian Whitten paid the remaining bill in January 2024, he said, concerned it would be turned over to a collection agency and hurt his son’s credit — and his well-being.

There was one more twist: He was shocked when he later reviewed his credit card statements and discovered that AMR had quietly but fully refunded his payment in October.

“It’s amazing that he got his money back,” Kelmar said. “That’s what’s shocking.”

In a statement, Suzie Robinson, vice president of revenue cycle management with AMR, said the company’s third-party billing agency regularly performs audits to ensure accuracy. An audit of Jagdish Whitten’s bill “revealed that the care provided did not meet the criteria for critical care,” Robinson said, which prompted the full refund.

Robinson said audits indicated fewer than 1% of its 4 million medical encounters annually are billed incorrectly.

The Takeaway

Robinson said patients who feel that AMR has billed them incorrectly should contact the company via email.

For patients in need of an ambulance in an emergency, there are few protections — and usually few options: Sometimes you don’t have a better choice than to get in.

require that health plans cover certain surprise bills, with patients paying only what they would if they had received in-network care. Expanding those protections to ground ambulance bills would require Congress to act.

Ambulance providers deserve to be appropriately compensated for their vital role in our medical system, Kelmar said. But the system as it stands almost incentivizes providers to charge a higher rate, which can lead to surprise billing and financial hardship for patients and their families, she said.

Kelmar said she worries not just about the debt those bills create for consumers but also that people may decline vital ambulance transportation in an emergency, for fear of getting hit with an exorbitant bill.

“We just need to bring some sense back to the system,” she said.

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It had been days since Hurricane Beryl blew ashore from the Gulf of Mexico on July 8, causing widespread destruction and knocking out power to more than 2 million people, including the Houston senior independent living facility where Kitzmiller lives. Outdoor temperatures had reached at least 90 degrees most days, and the heat inside the building was stifling.

Kitzmiller moved there not long ago with Kai, her 12-year-old dog, shortly after riding out 90-plus-mph winds from a under a comforter on the floor of the 33-foot RV she called home. She didn’t need medical care, as a nursing home would offer, and thought she and Kai could be safer at an independent senior facility than in the RV. She assumed her new home would have an emergency power system in place at least equivalent to that of the post offices she’d worked in for 35 years.

“I checked out the food. I checked out the activities,” said Kitzmiller, 61, now retired. “I didn’t know I needed to inquire about a generator.”

Even after multiple incidents of extreme weather — including a 2021 Texas winter storm that caused widespread blackouts and prompted a — not much has changed for those living in long-term care facilities when natural disasters strike in Texas or elsewhere.

“There has been some movement, but I think it’s been way too slow,” said , a professor of health care policy at Harvard Medical School. “We keep getting tested and we keep failing the test. But I do think we are going to have to face this issue.”

A power outage can be difficult for anyone, but older adults are especially vulnerable to temperature extremes, with medications or medical conditions affecting their bodies’ and . Additionally, some medications need .

Federal guidelines require nursing homes to maintain safe indoor temperatures but do not regulate how. For example, facilities face no requirement that generators or other alternative energy sources support heating and air conditioning systems. States are largely responsible for compliance, Grabowski said, and if states are failing in that regard, change doesn’t happen.

Furthermore, while nursing homes face such federal oversight, lower-care-level facilities that provide some medical care — known as assisted living — are regulated at the state level, so the rules for emergency preparedness vary widely.

Some states have toughened those guidelines. Maryland in assisted living facilities following Hurricane Isabel, which left more than 1.2 million residents in the state without power in 2003. Florida in 2018, after Hurricane Irma led to deaths at one facility.

But Texas has not. And no requirements for generators exist in Texas for the roughly 2,000 assisted living facilities or the even less regulated independent living sites, like Kitzmiller’s.

Generally, apartment complexes marketed to senior citizens, known in the industry as independent living facilities, don’t have any special regulations in Texas and many other states.

Nationally, assisted living facilities and independent living facilities have been the fastest-growing sectors in senior living. Residents at such facilities often have medical needs, Grabowski said, but for a variety of reasons have chosen to live in an environment that allows more independence than a nursing home, which would provide medical care. That doesn’t mean the residents in these lower-care-level facilities are any less susceptible to extreme temperatures when the power goes out.

“If you’re overwhelmed by the heat in your apartment, that’s unsafe,” he said.

Republican state Rep. tried several times since 2020 to pass legislation requiring assisted living facilities in Texas to have backup generators. But the bills failed. He is not seeking reelection this year.

“It’s horrible what the state of Texas is doing,” said Thompson, blaming corporate greed and politicians more interested in stirring up their base and raising their national profile than improving the lives of Texans. “How we treat our elderly says something about us — and they’re not being treated right.”

Nim Kidd, chief of the Texas Division of Emergency Management, said at that senior facility operators are accountable if they do not keep residents safe. “That location is responsible for the health, safety, and welfare of the patients and residents that are there,” he . “It is that facility’s responsibility.”

Under , power restoration is supposed to be prioritized for nursing, assisted living, and hospice facilities.

The resistance to adding oversight or more governmental protections has not surprised , a senior manager at the Harris County Long-Term Care Ombudsman Program at UTHealth Houston’s Cizik School of Nursing. He said that while he believes the safety and health of residents are paramount, he recognizes that installing generators is expensive. He also said some people within the industry continue to believe extreme events are rare.

“But all of us in Houston this year already learned that they’re happening more frequently,” Shelley said. “This is already the third time since May that big portions of Houston have been without power for long periods of time.”

After the 2021 blackouts, Texas’ Health and Human Services Commission conducted a that found 47% of the assisted living and 99% of the nursing care facilities that responded reported having generators.

The U.S. Senate investigation following the 2021 Texas storm recommended a national requirement that assisted living facilities have emergency power supplies to both maintain safe temperatures and keep medical equipment running.

A from Texas’ long-term care ombudsman, Patty Ducayet, also recommended requiring generators at assisted living centers. The report suggested that all long-term care facilities maintain safe temperatures in a location that can be accessed by every resident. The report recommended requiring assisted living facilities to annually submit emergency response plans to state regulators to be reviewed by state officials. The recommendations have not been adopted.

On July 15 — more than a week after Beryl hit — Kitzmiller said she just wanted the power back on. She praised the staff at her facility but said she worried for residents who were isolated on her building’s second and third floors, which were hotter amid the outage. Some were unable to keep required medicine refrigerated, she said. And without functioning elevators, many couldn’t get to the first floor, where it was cooler.

Mostly, Kitzmiller said, she was frustrated with companies and politicians who hadn’t yet fixed the problem.

“It’s their mothers, their grandmothers, and their family in these homes, these facilities,” she said. “All I can think is ‘Shame on you.’”

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Although lead was banned from new water service lines in 1986, it’s estimated that still carry drinking water to homes and businesses throughout the country. Under the EPA’s proposal, water utilities would be required to replace within 10 years.

The proposal from the Biden administration builds on different rules put out in the waning days of the Trump term that allowed up to 30 years for service line replacement, triggered only when lead levels test higher than 15 parts per billion. The new proposal, which would largely supplant , calls for stricter monitoring, enhanced public education, and the 10-year pipe replacement mandate regardless of lead levels.

An October deadline looms for the new rules to be adopted; otherwise, enforcement of the less-stringent Trump administration rules will begin. And complicating matters more: November’s election results could shake up whose rules the nation must follow.

While many cities and states have begun to replace their lead pipes, some utilities and officials say the 10-year and too expensive. They say it would be difficult for water utilities to follow the rules while dealing with contaminants, known as “forever chemicals,” and , among other issues.

“Nobody will tell you that having lead in contact with water is a great idea,” said Steve Via, director of federal relations for the , the country’s largest nonprofit water utility industry group. “The question becomes: How urgent a matter is it, and at what pace does it need to be done?”

Already, have argued that the proposed rules infringe on states’ rights and chase “speculative” benefits. On the other side, said that the EPA should find more ways to ensure pipes are quickly replaced in low-income areas.

To be sure, to consume. Lead is a irreversible long-term organ damage, lower IQs, higher risk for miscarriage, asthma, cardiovascular disease, impotence, and elevated blood pressure.

Public health advocates say societal costs — in health care, social services, and lost productivity — far outweigh the cost of replacement. They say corrosion controls that have limited lead exposure can and do fail, pointing to human and systemic errors that prompted the , where thousands of people were exposed to high lead levels in their drinking water.

“That’s the whole thing about lead pipes: They unexpectedly release lead into drinking water,” said , who manages an initiative focused on reducing lead exposure from water with the , a national advocacy group. “I don’t think kicking the can down the road is the solution.”

According to a by , an instructor at Harvard’s T.H. Chan School of Public Health, the benefit of replacing lead pipes outweighs the costs by a 35:1 ratio.

Using the EPA’s estimated $335 million annual costs from the Trump rules, which include water sampling, corrosion control treatments, inventorying and replacement of lead service lines, and educational outreach, Levin’s analysis shows that $9 billion in annual health care costs could be avoided. An additional $2 billion in spending — through upgraded infrastructure and reduced corrosion damage to appliances — could be saved. The broad spectrum of health-related costs has historically been ignored in analyzing the actual costs of leaving lead service lines in place, said Levin, a former EPA scientist.

Estimates of the cost to replace the nation’s lead pipes range from to more than , far higher than the set aside in the . The Biden administration has framed those funds as a down payment, or principal forgiveness loans of the estimated number of lead pipes per state. Other can also be tapped.

Replacement costs vary widely by location, with average costs ranging from per service line to .

, legislative director for sustainability at the National League of Cities, said funding challenges could render the EPA’s 10-year timeline unrealistic. While her organization is encouraging local leaders to secure as much funding as possible, what’s available won’t be enough to cover replacement costs for some localities — especially low-income areas, which often have older infrastructure and more lead pipes.

Some direct costs could fall to property owners, such as replacing the lines connecting their water meters to their homes. And people could face indirect costs if utilities increase customer rates to offset the expense.

Still, some communities, such as Olathe, Kansas, are finding ways to move forward with a patchwork of funding. Out of 37,000 service lines there, 266 galvanized pipes were found serving downtown properties, where many of the city’s most vulnerable residents live. The coating for .

Workers will replace the lines at no cost to property owners in the city of 147,000 people outside Kansas City, said Megan Spence, who is . It is expected to cost around $2.3 million, paid for with from the Kansas Department of Health and Environment and about $1.2 million in federal infrastructure funding. About $500,000 for lawn restoration is included.

“We’re really looking at this as an opportunity and another way to protect public health,” said Spence. “There shouldn’t be any lead lines in any drinking water distribution systems.”

Elsewhere, some Republicans, such as Indiana state Sen. , are leading the charge to replace the pipes despite historical pushback in conservative states against federal mandates. He said lawmakers should consider the harm — and long-term costs — caused by delaying the cleanup of lead from drinking water.

In March, Indiana’s Republican Gov. signed a , which Koch authored, designed to lower costs for replacing customer-owned lead service lines. Under the law, landlords are required to enroll in a state-approved program to have their lead pipes removed at no cost by their water utility or pay for replacement themselves.

Koch said estimates for replacing customer-owned service lines are around $8,000, though the cost could be significantly higher for some properties. But by starting the work now, Koch said, utilities can avoid price inflation and ultimately remove pipes more cost efficiently.

Meanwhile, time is running out to publish the Biden administration’s proposed rules in the . Water utilities will be required to comply with the Trump rules as of Oct. 16 unless the EPA publishes the newer rules before then, said , a senior strategic director of the National Resources Defense Council, an advocacy group. It remains unknown what the June 28 Supreme Court , known as the “Chevron deference” decision, will mean for either set of rules.

A deadline is also looming for the 60-day “look-back” period under the , during which a regulation can be repealed. If control of Congress or the White House flips with the November election, the Biden administration’s rules could be repealed under an emboldened Congress even before the January swearing in of new officeholders.

“Depending on how the election goes, it could become a hot issue,” said , national director of the advocacy organization .

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“I was just trying to make a living,” said Brady, 56, a dealer and supervisor at Borgata in that New Jersey resort city. “You don’t think, you know, that you’re going to get sick at your job.”

Some casinos continue to allow indoor smoking even as the share of Americans who smoke fell from about and smoking is banned in at least some public spaces , the District of Columbia, and U.S. territories. Still, 13 of the that allow casino gambling permit smoking in at least part of their facilities.

Brady is among the casino employees, anti-smoking advocates, and public health experts who argue it is long past time to snuff out casino exemptions from smoking bans, given the dangers of secondhand smoke. But they’ve faced stiff pushback from some gambling industry leaders, including in Missouri, Louisiana, Kentucky, and New Jersey, who argue that smoking bans drive gamblers away — especially in places where patrons can go instead to a casino in a nearby jurisdiction that allows them to light up.

The covid-19 pandemic renewed this fight and sharpened the arguments on both sides — on the dangers of particulate matter for the anti-smoking side and the vulnerability of revenues for the casino industry, even as the American Gaming Association reported in 2022 for in-person casino gambling beyond the growth of sports betting and online gambling.

Casinos were for several months in spring 2020 as part of the nationwide effort to mitigate the spread of the coronavirus. Rules governing reopening, including masking and physical distancing requirements and bans on smoking, varied by state and, in some cases, by casino operator and community.

After suffering , some casino executives, and representing workers, leaned into commissioned by the Casino Association of New Jersey to combat efforts to ban or restrict smoking at their properties. Using data from 2019, the report suggests that as many as 2,500 Atlantic City casino workers could lose their jobs and tax revenue could fall by as much as $44 million in the first year if smoking is banned in New Jersey but not in neighboring Pennsylvania. Both states considered prohibitions on casino smoking in 2023; New Jersey lawmakers and Pennsylvania’s .

, a social media influencer specializing in casinos and gambling, said he has heard the arguments about lost business before — and is unconvinced. “People are not driving or flying to a casino to have a cigarette,” he said.

Still, officials in some places are persuaded by arguments about depressed tax revenue. Last spring, Shreveport, Louisiana, officials on smoking in casinos. Those pushing said local gambling taxes fell when gamblers left for nearby casinos where they could smoke. The new ordinance of the casino floor.

And announced in June it was planned for empty mall space in Owensboro, Kentucky, to a location outside the city limits. Though the company declined to comment for this article, the city’s mayor told the newspaper that a primary reason for the move was the city’s long-standing voter-approved smoking restrictions, which do not exempt casinos.

, director of the St. Louis County Department of Public Health in Missouri, was part of an effort last year to end a casino loophole in her county’s 2011 indoor smoking ban. But after pushback from the gambling company , a allowing smoking on 50% of a casino’s floor.

“It’s a balance and one that we feel the marketplace should determine, particularly in such a competitive environment with other gaming facilities nearby and in neighboring states,” said Jeff Morris, Penn Entertainment’s vice president of public affairs and government relations.

Penn Entertainment employs “state of the art ventilation systems, extremely high ceilings,” and “adequate separation of smoking and non-smoking areas,” he wrote in an email to �鶹Ů�� Health News.

The problem, Cunningham said, is that secondhand smoke cannot be contained to a single location in a big room.

“There’s no safe amount, and trying to restrict it to a certain area isn’t going to work,” she said.

Filtration systems can remove much of the visible smoke, as well as the odor, from indoor spaces even when lots of people are smoking, creating the impression of clean air. But existing technology does not eliminate the dangerous particulates in cigarette smoke, according to a from the American Society of Heating, Refrigerating and Air-Conditioning Engineers, or ASHRAE.

A for the National Institutes of Health evaluated particulate matter at eight Las Vegas casinos that allowed smoking and one that did not. In casinos where smoking is allowed, particulate levels were significantly higher — even in areas designated as nonsmoking — than at the nonsmoking casino.

And in ventilated casinos where indoor smoking is allowed, , workers can have nicotine levels as much as 600% higher than employees exposed to smoking in other workplaces.

can cause coronary heart disease, stroke, lung cancer, and other diseases. Some studies have shown a link to breast cancer, although more research is needed, .

The pandemic raised awareness of the dangers of airborne particulates, giving smoking bans fresh momentum, said , co-founder of the independent industry consulting group C3 Gaming, which produced a largely refuting the economic risk of casinos going smoke-free.

Indeed, more than 1,000 U.S. casinos and other gambling properties , including more than 140 tribal casinos, according to Americans Nonsmokers’ Rights Foundation.

New Mexico’s tribal leaders collectively agreed to maintain smoking bans when pandemic restrictions were lifted, said , chief executive of Acoma Business Enterprises and in North Acomita Village. Employee health has improved, he said, qualifying the casino for rebates on its insurance premium. Cleaning and replacement costs for carpets and equipment fell, he said, and the tribes “haven’t missed a beat” on revenues.

Some guests have grumbled about having to go outside to smoke, Floge said, but that’s about it. “We don’t have anybody who jumps up and down, or throws a fit and says, ‘I’m leaving and never coming back!’” he said.

Casino executives who oppose smoking restrictions overlook people who want to enjoy the “great food and the great entertainment, but won’t step foot in a casino because they get hit by a blast of smoke as soon as they step in,” said Pete Naccarelli, a Borgata dealer and one of three co-founders of the advocacy organization

He said they founded the group, which has chapters in New Jersey, Kansas, Pennsylvania, Rhode Island, and Virginia, after his casino put out ashtrays at 12:01 a.m. the day the pandemic-related smoking ban officially ended. Borgata did not answer requests for comment.

The industry-commissioned report on New Jersey suggests that while more nonsmokers might frequent casinos once smoking is banned, they probably would not make up for the revenue lost if smokers choose other venues or when smokers take breaks from gambling to light up.

But Brady, now cancer-free after chemotherapy and a full mastectomy, believes that if policymakers spent some time breathing the same air she and her co-workers do they’d act more quickly to ban smoking in casinos, rather than prioritize tax revenues. “Our lives are more important,” she said.

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But, just five weeks after confirming her pregnancy, and the day after a gender-reveal party where she announced she was having a girl, she seemed unable to stop urinating. She didn’t realize her amniotic fluid was leaking. Then came the excruciating pain.

“I ended up going to the emergency room,” said Hill, now 35. “That’s where I had the most traumatic, horrible experience ever.”

An ultrasound showed she had . Yet, over the angry protestations of her nurse, Hill said, the attending doctor insisted Hill be discharged and see her own OB-GYN the next day. The doctor brushed off her concerns, she said. The next morning, her OB-GYN’s office rushed her back to the hospital. But she lost her baby, Tabitha Winnie Denkins.

Black women are than women from other racial groups to carry a pregnancy to term — and in Harris County, where Houston is located, when they do, their before their 1st birthday as those from other racial groups. Black fetal and infant deaths are part of a continuum of systemic failures that contribute to disproportionately high Black maternal mortality rates.

“This is a public health crisis as it relates to Black moms and babies that is completely preventable,” said , who took over as executive director of Harris County Public Health in March 2021. “When you look at the breakdown demographically — who’s disproportionately impacted by the lack of access — we have a situation where we can expect these horrible outcomes.”

In fact, Harris County ranks third, behind only Chicago’s Cook County and Detroit’s Wayne County, in what are known as excess Black infant deaths, according to the federal . Those three counties, which also are among the nation’s most populated counties, 7% of all Black births in the country and 9% of excess Black infant deaths, said Ashley Hirai, a senior scientist at HRSA. The counties have the largest number of Black births but also that would not occur if Black babies had the same chance of reaching their 1st birthdays as white infants.

exist for Black infants to die at higher rates than white infants. Such deaths are often called “deaths of disparity” because they are likely attributable to systemic racial disparities. Regardless of economic status or educational attainment, the stress from experiencing persistent systemic racism leads to adverse health consequences for Black women and their babies, published in the journal Women’s Health Issues.

These miscarriages and deaths can occur even in communities that otherwise appear to have vast health resources. In Harris County, for example, home to two public hospitals and the — the largest medical complex in the world, with more than 54 medical-related institutions and 21 hospitals — mortality rates were 11.1 per 1,000 births for Black infants from 2014 through 2019, according to the March of Dimes, compared with 4.7 for white infants.

The abundance of providers in Harris County pregnant Black patients that they can find care that is timely, appropriate, or — care that acknowledges a person’s heritage, beliefs, and values during treatment.

Regardless of income or insurance status, studies show, medical providers Black women’s questions and concerns, , and fail to offer appropriate care. By contrast, a study of 1.8 million hospital births spanning 23 years in Florida found that the gap in mortality rates between Black and white newborns for Black babies when Black physicians cared for them.

In 2013, Houstonian Kay Matthews was running a successful catering business when she lost the daughter she’d named Troya eight months and three weeks into pregnancy.

Matthews hadn’t felt well — she’d been sluggish and tired — for several days, but her doctor told her not to worry. Not long afterward, she woke up realizing something was terribly wrong. She passed out after calling 911. When she woke up, she was in the emergency room.

None of the medical staffers would talk to her, she said. She had no idea what was happening, no one was answering her questions, and she started having a panic attack.

“It kind of felt like I was watching myself lose everything,” she recalled. She said the nurse seemed annoyed with her questions and demeanor and gave her a sedative. “When I woke up, I did not have a baby.”

Matthews recalled one staffer insinuating that she and her partner couldn’t afford to pay the bill, even though she was a financially stable business owner, and he had a well-paying job as a truck driver.

She said hospital staffers showed minimal compassion after she lost Troya. They seemed to dismiss her grief, she said. It was the first time she could remember feeling as if she was treated callously because she is Black.

“There was no respect at all, like zero respect or compassion,” said Matthews, who has since founded the , a Houston nonprofit focused on improving maternal mental health, primarily for Black patients.

To help combat these high mortality rates in Harris County, Robinson created a maternal child and health office and launched a home-visit pilot program to connect prenatal and postpartum patients with resources such as housing assistance, medical care, and social services. Limited access to healthy food and recreational activities are barriers to healthy pregnancy outcomes. Studies have also shown a .

For Hill, not having insurance was also likely a factor. While pregnant, Hill said, she had had just a single visit at a community health center before her miscarriage. She was working multiple jobs as a college student and did not have employer-provided medical coverage. She was not yet approved for Medicaid, the state-federal program for people with low incomes or disabilities.

Texas has the nation’s highest uninsured rate, with nearly 5 million Texans — or — lacking coverage, said Anne Dunkelberg, a senior fellow with , a nonprofit research and advocacy institute focused on equity in public policy. While non-Hispanic Black Texans have a slightly better rate — 17% — than that overall state level, it’s still higher than the 12% rate for non-Hispanic white Texans, according to census data. Health experts fear that many more people are losing insurance coverage as for Medicaid.

Without full coverage, those who are pregnant may avoid seeking care, meaning they skip being seen in the critical first trimester, said , medical director at Houston’s .

Texas had the receiving early prenatal care in the nation in 2020, according to the state’s 2021 Healthy Texas Mothers and Babies Databook, and non-Hispanic Black moms and babies were less likely to receive first-trimester care than other racial and ethnic groups. Babies were three times as likely to have a low birth weight and five times as likely to die as those whose mothers had care.

If Hill’s miscarriage reflects how the system failed her, the birth of her twins two years later demonstrates how appropriate support has the potential to change outcomes.

With Medicaid coverage from the beginning of her second pregnancy, Hill saw a high-risk pregnancy specialist. Diagnosed early with what’s called an , Hill was consistently seen, monitored, and treated. She also was put on bed rest for her entire pregnancy.

She had an emergency cesarean section at 34 weeks, and both babies spent two weeks in neonatal intensive care. Today, her premature twins are 3 years old.

“I believe God — and the high-risk doctor — saved my twins,” she said.

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Son parte de una nueva migración de estadounidenses que se están desarraigando debido a una que restringen la prestación de servicios de salud para personas transgénero.

Missouri, Florida y Texas se encuentran entre la atención de afirmación de género para jóvenes trans. Los tres estados , el seguro de salud público para personas de bajos ingresos, cubra aspectos clave de estos servicios para pacientes de todas las edades.

Más de una cuarta parte de los adultos trans encuestados por a fines del año pasado dijeron que se mudaron a otro vecindario, ciudad o estado en busca de un ambiente más tolerante. Ahora se sienten impulsados por las nuevas restricciones en la atención de la salud y la posibilidad de que estas se sigan multiplicando.

Muchos de ellos optan por estados que están aprobando leyes para proteger y apoyar estos servicios, lugares que se han convertido en santuarios. En California, por ejemplo, se aprobó una ley el otoño pasado que servicios de afirmación de género. Y ahora, los proveedores en California están recibiendo cada vez más llamadas de personas que quieren mudarse al estado para evitar interrupciones en sus servicios, dijo Scott Nass, médico local de familia y experto en atención de personas transgénero.

Pero esta afluencia de pacientes presenta un desafío, dijo Nass, “ya que el sistema actual no puede recibir a todos los refugiados que pudiera haber”.

En Florida, la persecución legislativa de las personas trans y su atención médica convenció a Arlo Dennis, de 35 años, de que es hora de irse. Hace más de una década que vive con los cinco miembros de su familia en Orlando. Ahora, tienen planes de mudarse a Maryland.

Dennis ya no tiene acceso a su terapia de reemplazo hormonal. Esto se debe a que desde fines de agosto, el seguro de Medicaid de Florida ya no cubre la atención médica relacionada con la transición. El estado considera que estos tratamientos son experimentales y que su eficacia no está suficientemente probada. Dennis dijo que su medicación se acabó en enero.

“Sin duda esto me ha causado problemas de salud mental y física”, explicó Dennis.

Agregó que mudarse a Maryland requiere recursos que su familia no tiene. Lanzaron una en abril y ya recaudaron más de $5,600, la mayoría donada por desconocidos, contó Dennis. Ahora la familia de tres adultos y dos niños piensa irse de Florida en julio. La decisión no fue fácil, pero sintieron que no había otra opción.

“No me importa si a mi vecino no le gusta mi forma de vivir”, dijo Dennis. “Pero esto era una prohibición literal de mi ser y me impedía el acceso a la atención médica”.

Mitch y Tiffany Tillison decidieron irse de Texas después de que los republicanos del estado enfocaron su agenda legislativa en las políticas anti-trans para los jóvenes. Su hija de 12 años se declaró trans hace unos dos años. Los padres pidieron que se publicara solo su segundo nombre, Rebecca: temen por su seguridad debido a las amenazas de violencia contra las personas trans.

Este año, la Legislatura de Texas que limita la atención médica de afirmación de género para jóvenes menores de 18 años. La ley prohíbe específicamento aquellos servicios de salud física. Sin embargo, defensores de los derechos LGBTQ+ en el estado dicen que las medidas recientes también han tenido un escalofriante efecto sobre la prestación de servicios de salud mental para personas trans.

Los Tillison se negaron a precisar si su hija está recibiendo tratamiento y cuál. Pero afirmaron que reservan el derecho, como padres, de poder brindarle a su hija la atención que necesita, y que el estado de Texas les ha quitado ese derecho.

A esto se suman las amenazas cada vez más serias de violencia en su comunidad, sobre todo después del por parte de un supuesto neonazi. La masacre, que ocurrió en el centro comercial Allen Premium Outlets, en los suburbios de Dallas, a 20 millas de su casa, hizo que la familia decidiera mudarse al estado de Washington. 

“La he mantenido a salvo”, dijo Tiffany Tillison, agregando que suele recordar el momento en que su hija le dijo que era trans durante un largo viaje a casa después de un torneo de fútbol. “Es mi responsabilidad seguir protegiéndola. Mi amor es interminable, incondicional”.

Por su parte, Rebecca tiene una actitud pragmática sobre la mudanza, que está planeada para julio. “Es triste pero tenemos que hacerlo”, dijo.

En Missouri, donde casi se aprueba una medida que limitaba la atención de la salud trans, algunas personas empezaron a repensar si deberían vivir ahí.

En abril, el fiscal general de Missouri, Andrew Bailey, presentó una para limitar el acceso a la cirugía relacionada con la transición y el tratamiento hormonal cruzado para personas de todas las edades, además de restringir los bloqueadores de la pubertad, medicamentos que detienen la pubertad pero no alteran las características de género.

Al día siguiente, Dempsey, de 24 años, lanzó una para recaudar fondos para irse con sus parejas de Springfield, Missouri.

“Somos tres personas trans que dependen de la terapia de reemplazo hormonal y de la atención de afirmación de género que pronto será casi prohibida”, escribió Dempsey en su campaña de GoFundMe, agregando que querían “escapar de Missouri cuando se termine nuestro contrato de alquiler a fines de mayo.”

Dempsey dijo que su médico en Springfield les recetó un suministro de tres meses de terapia hormonal para cubrirlos hasta la mudanza.

Bailey retiró la norma en mayo, cuando la legislatura estatal para menores pero no para adultos como Dempsey y sus parejas. Aún así, Dempsey dijo que no tenía muchas esperanzas para su futuro en Missouri.

El estado vecino de Illinois era una opción obvia para mudarse; la legislatura allí que exige que los seguros médicos regulados por el estado cubran la atención médica de afirmación de género sin ningún costo adicional. Dónde en Illinois exactamente era una pregunta más importante. Chicago y sus suburbios parecían demasiado caros. Sus parejas querían una comunidad progresista similar en tamaño y costo de vida a la ciudad que estaban dejando. Buscaban “un Springfield”, en Illinois.

“Pero no Springfield, Illinois”, bromeó Dempsey.

Gwendolyn Schwarz, de 23 años, también esperaba quedarse en Springfield, Missouri, su ciudad natal, donde recientemente se graduó de Missouri State University con un título en estudios de cine y medios de comunicación. Pensaba seguir su carrera académica en un programa de posgrado de la universidad y, en el siguiente año, someterse a una cirugía de transición, que puede requerir varios meses de recuperación.Pero sus planes cambiaron cuando la norma propuesta por Bailey generó miedo y confusión.“No quiero quedarme atrapada y temporalmente discapacitada en un estado que no reconoce mi humanidad”, dijo Schwarz.

Ella y un grupo de amigos tienen planeado mudarse al oeste, al estado de Nevada, cuyos legisladores aprobaron una medida que cubra el tratamiento de afirmación de género para pacientes trans.

Schwarz espera que mudarse de Missouri a Carson City, la capital de Nevada, le permita seguir viviendo su vida sin miedo y eventualmente someterse a la cirugía que desea.

Dempsey y sus parejas finalmente decidieron mudarse a Moline, Illinois. Los tres tuvieron que renunciar a sus trabajos, pero han recaudado $3,000 en GoFundMe, más que suficiente para cubrir el depósito de un nuevo departamento.

El 31 de mayo, empacaron las pertenencias que no habían vendido e hicieron el viaje de 400 millas hasta su nuevo hogar.

Dempsey ya tuvo una cita con un proveedor médico en una clínica en Moline que atiende a la comunidad LGBTQ+, y consiguió que le recetaran los medicamentos que necesita para su terapia hormonal.

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They are part of a new migration of Americans who are uprooting their lives in response to a across the country restricting health care for transgender people.

Missouri, Florida, and Texas are among at least components of gender-affirming health care for trans youth. Those three states are also among the — the public health insurance for people with low incomes — from paying for key aspects of such care for patients of all ages.

More than a quarter of trans adults surveyed by late last year said they had moved to a different neighborhood, city, or state to find more acceptance. Now, new restrictions on health care and the possibility of more in the future provide additional motivation.

Many are heading to places that are passing laws to support care for trans people, making those states appealing sanctuaries. California, for example, passed a law last fall to from prosecution. And now, California providers are getting more calls from people seeking to relocate there to prevent disruptions to their care, said Scott Nass, a family physician and expert on transgender care based in the state.

But the influx of patients presents a challenge, Nass said, “because the system that exists, it can’t handle all the refugees that potentially are out there.”

In Florida, the legislative targeting of trans people and their health care has persuaded Arlo Dennis, 35, that it is time to uproot their family of five from the Orlando area, where they’ve lived for more than a decade. They plan to move to Maryland.

Dennis, who uses they/them pronouns, no longer has access to hormone replacement therapy after Florida’s Medicaid program stopped covering transition-related care in late August under the claim that the treatments are experimental and lack evidence of being effective. Dennis said they ran out of their medication in January.

“It’s definitely led to my mental health having struggles and my physical health having struggles,” Dennis said.

Moving to Maryland will take resources Dennis said their family does not have. They launched a in April and have raised more than $5,600, most of it from strangers, Dennis said. Now the family, which includes three adults and two children, plans to leave Florida in July. The decision wasn’t easy, Dennis said, but they felt like they had no choice.

“I’m OK if my neighbor doesn’t agree with how I’m living my life,” Dennis said. “But this was literally outlawing my existence and making my access to health care impossible.”

Mitch and Tiffany Tillison decided they needed to leave Texas after the state’s Republicans made anti-trans policies for youth central to their legislative agenda. Their 12-year-old came out as trans about two years ago. They asked for only her middle name, Rebecca, to be published because they fear for her safety due to threats of violence against trans people.

This year, the Texas Legislature limiting gender-affirming health care for youth under 18. It specifically bans physical care, but local LGBTQ+ advocates say recent crackdowns also have had a chilling effect on the availability of mental health therapy for trans people.

While the Tillisons declined to specify what treatment, if any, their daughter is getting, they said they reserve the right, as her parents, to provide the care their daughter needs — and that Texas has taken away that right. That, plus increasing threats of violence in their community, particularly in the wake of the by a professed neo-Nazi at Allen Premium Outlets, about 20 miles from their home in the Dallas suburbs, caused the family to decide to move to Washington state.

“I’ve kept her safe,” said Tiffany Tillison, adding that she often thinks back to the moment her daughter came out to her during a long, late drive home from a daylong soccer tournament. “It’s my job to continue to keep her safe. My love is unending, unconditional.”

For her part, Rebecca is pragmatic about the move planned for July: “It’s sad, but it is what we have to do,” she said.

A close call on losing key medical care in Missouri also pushed some trans people to rethink living there. In April, Missouri Attorney General Andrew Bailey seeking to limit access to transition-related surgery and cross-sex hormones for all ages, and restrict puberty-blocking drugs, which pause puberty but don’t alter gender characteristics. The next day, Dempsey, 24, who uses they/them pronouns, launched a for themself and their two partners to leave Springfield, Missouri.

“We are three trans individuals who all depend on the Hormone Replacement Therapy and gender affirming care that is soon to be prohibitively limited,” Dempsey wrote in the fundraising appeal, adding they wanted to “escape Missouri when our lease is up at the end of May.”

Dempsey said they also got a prescription for a three-month supply of hormone therapy from their doctor in Springfield to tide them over until the move.

Bailey withdrew his rule after the state legislature in May to such treatments for minors, but not adults like Dempsey and their partners. Still, Dempsey said their futures in Missouri didn’t look promising.

Neighboring Illinois was an obvious place to move; the legislature there that requires state-regulated insurance plans to cover gender-affirming health care at no extra cost. Where exactly was a bigger question. Chicago and its suburbs seemed too expensive. The partners wanted a progressive community similar in size and cost of living to the city they were leaving. They were looking for a Springfield in Illinois.

“But not Springfield, Illinois,” Dempsey quipped.

Gwendolyn Schwarz, 23, had also hoped to stay in Springfield, Missouri, her hometown, where she had recently graduated from Missouri State University with a degree in film and media studies. She had planned to continue her education in a graduate program at the university and, within the next year, get transition-related surgery, which can take a few months of recovery.

But her plans changed as Bailey’s rule stirred fear and confusion.

“I don’t want to be stuck and temporarily disabled in a state that doesn’t see my humanity,” Schwarz said.

She and a group of friends are planning to move west to Nevada, where state lawmakers have approved a measure that gender-affirming treatment for trans patients.

Schwarz said she hopes moving from Missouri to Nevada’s capital, Carson City, will allow her to continue living her life without fear and eventually get the surgery she wants.

Dempsey and their partners settled on Moline, Illinois, as the place to move. All three had to quit their jobs to relocate, but they have raised $3,000 on GoFundMe, more than enough to put a deposit down on an apartment.

On May 31, the partners packed the belongings they hadn’t sold and made the 400-mile drive to their new home.

Since then, Dempsey has already been able to see a medical provider at a clinic in Moline that caters to the LGBTQ+ community — and has gotten a new prescription for hormone therapy.

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Shelton llevaba meses tomando medicamentos para lo que, según su médico, eran hongos en las uñas, pero una de ellas tenía muy mal aspecto.

Después de pagar, la mujer se acercó a Shelton y le dijo que, aunque no era médica, pensaba que lo de sus pies era algo más serio que hongos.

“Me dijo: ‘Sé que para ti soy una desconocida, pero por favor, ve a que te revise otra persona'”, contó Shelton, que vive en un suburbio de Maryland, en el área de Washington, DC.

Shelton, que ahora tiene 42 años, siguió el consejo.

Las pruebas de laboratorio iniciales no dieron un diagnóstico claro, pero su nuevo médico le aseguró que tenía un melanoma lentiginoso acral, una forma de cáncer de piel.

Las pruebas posteriores le dieron la razón. Aunque es poco frecuente, es el subtipo más común de melanoma en personas de raza negra, como Shelton. Es , y suele aparecer en la piel menos expuesta al sol, como las manos, las plantas de los pies y debajo de las uñas.

Los investigadores no entienden qué causa el melanoma lentiginoso acral y no saben cómo prevenirlo. A menudo se pasa por alto en las revisiones de la piel o se diagnostica erróneamente.

El cáncer de piel, en general, suele pasarse por alto o diagnosticarse erróneamente en los pacientes de piel negra.

Históricamente, los afroamericanos y las personas de piel oscura han quedado al margen de los esfuerzos para combatir el cáncer de piel. Durante mucho tiempo, los fabricantes de protectores solares y una comunidad médica sin conocimientos de diversidad y competencia cultural —el reconocimiento de la raíces, las creencias y los valores de un paciente— han ignorado a parte de la población a la hora de informar sobre la proteción solar o sobre cómo comprobar si su piel presenta daños o cáncer.

Es cierto que las tasas de cáncer de piel son más bajas entre las personas con tonos de piel oscuros. El melanoma es más de , con un riesgo general de 1 de cada 38 en las personas blancas, frente a 1 de cada 1,000 en las personas negras. La melanina proporciona cierta protección contra el daño solar, por eso los que tienen más cantidad de melanina —los de piel más oscura— están mejor protegidos que los de piel más clara.

Pero, en general, los pacientes de piel negra tienen más probabilidades de que se les diagnostiquen diversas formas de cáncer de piel en fases más avanzadas, según la , de la , una organización sin fines de lucro que trabaja para educar a los médicos y al público en general sobre la salud de la piel.

La tasa de supervivencia del melanoma a cinco años entre los negros no hispanos es del 66%, frente al 90% de los blancos no hispanos, según un (CDC). Y uno de cada 3 hombres o mujeres negros diagnosticados de melanoma en Estados Unidos muere de la enfermedad, frente a 1 de cada 7 en el caso de los blancos no hispanos, afirma .

Dadas las disparidades conocidas en los resultados, la doctora , presidenta de la Skin of Color Society, dijo que se necesitan dos áreas de investigación: estudiar las iniciativas educativas para ver si la concientización podría conducir a un diagnóstico más temprano y a una mayor supervivencia; y determinar los factores de riesgo en los pacientes con piel oscura, especialmente los que conducen a la aparición del melanoma en lugares menos expuestos al sol.

Mejorar la competencia cultural y la diversidad dentro de la dermatología es solo un paso para mejorar el diagnóstico y los resultados. Según los , menos del 3% de los dermatólogos del país son negros. La ortopedia es la única especialidad médica con un porcentaje menor.

La dermatología ha sido tradicionalmente una de las especialidades más competitivas de la medicina, señaló la doctora instructora clínica de dermatología en Weill Cornell Medicine. Además de los estrictos requisitos académicos, la admisión a los programas de dermatología también depende de la conexión con mentores y de una amplia red de contactos. Y eso, según Henry, ha creado tradicionalmente barreras para los estudiantes de medicina negros que quieren dedicarse a la dermatología.

“Hay gran cantidad de obstáculos que les ponen las cosas difíciles a muchos estudiantes de color en un espacio tan exclusivo y reducido”, añadió.

Las recientes iniciativas para ayudar a los estudiantes a superar esas barreras empiezan a dar resultados, según la doctora , vicepresidenta de diversidad, equidad e inclusión en el departamento de dermatología de la Universidad de Pennsylvania y fundadora de la Skin of Color Society. Entre las iniciativas de la (AAD) se incluyen revisiones holísticas de las solicitudes de residencia, tutorías y programas para aumentar el interés de los estudiantes de secundaria y prepararlos para la universidad y la facultad de medicina.

La empresa de aplicaciones médicas busca reducir las disparidades en medicina a través del , creando un catálogo de imágenes que reflejan diversas enfermedades en diferentes colores de piel. Los cánceres de piel pueden tener un aspecto diferente en las pieles más claras que en las más oscuras, y como los médicos pueden haber sido formados únicamente con representaciones de pieles claras, aumenta la posibilidad de que se produzcan diagnósticos erróneos en personas de piel oscura.

El cambio también ha llegado a la industria de los protectores solares.

, vicepresidente y socio de la empresa de estudios de mercado de Chicago , afirmó que las fallas de la comunidad médica a la hora de proporcionar un cuidado adecuado de la piel para las personas de piel oscura son el reflejo de la falta de disponibilidad de protectores solares que satisfagan las necesidades de los pacientes, especialmente de los afroamericanos.

“Esto ha empujado a los empresarios negros, de un día para otro, a idear sus propias soluciones y sus propios productos”, apuntó Martínez-Bonilla. “No solo por la falta de productos, sino porque son las personas que mejor conocen sus necesidades”.

es una de esas empresarias. Se sorprendió cuando, entre los 30 y los 40 años, vio que le estaban saliendo lunares en la cara y el cuello similares a los que había visto de pequeña en miembros mayores de su familia. Supuso que era parte del envejecimiento. Pero su dermatólogo le dijo que se trataba de daños causados por el sol.

“Me quedé literalmente anonadada. Pensé: ‘Pero si yo soy negra'”, dijo, y añadió que nunca había utilizado ningún tipo de protección solar en su vida. “Era algo extraño para mí. Creía que no lo necesitábamos”.

Después de frustrarse buscando un protector solar sin residuos y que no le dejara la sensación de quemar su piel, trabajó con un químico que la ayudó a crear un protector solar con base mineral. Al principio, lo destinó solo a su uso personal, pero finalmente lanzó . La empresa, con sede en Los Angeles, educa sobre el cuidado de la piel y vende productos diseñados para consumidores de piel oscura.

también buscaba un protector solar que no “dejara un tono azul, morado o de otro tipo en mi piel”. Hasta que “me di cuenta de que no existía”.

Así que, en 2016, desarrolló productos que no dejan residuos, y finalmente lanzó

Lundy enfatizó que la educación es fundamental para el mercadeo de su empresa. “Nuestra misión es equipar a personas de todas las edades y tonos de piel con los productos de protección solar adecuados para que se tomen en serio la salud de su piel y se protejan del daño solar”.

Shelton, cuyo encuentro fortuito en la cola de la caja de una tienda le llevó al diagnóstico de un cáncer, dijo que se ha convertido en una fanática de los autoexámenes de la piel y de la protección solar, y que ahora todos la conocen en su piscina local como “la señora del protector solar”. Es posible que el tipo de cáncer de piel que padecía no se debiera a la exposición al sol, pero aumentó su concienciación sobre los daños en la piel y otros tipos de cáncer de piel.

Está libre de cáncer desde que el médico le extirpó con éxito el tumor del dedo del pie y se sometió a quimioterapia y radioterapia. Pero la experiencia fue traumática.

“Me cambió la vida”, aseguró.

Pero también dijo que ha retomado una vida activa y plena. Siempre estará agradecida a aquella desconocida que le habló aquel día, así como al médico que no creyó en la primera serie de pruebas de laboratorio, y que optó por confiar en sus instintos para comenzar inmediatamente el tratamiento.

Consejos para evitar el cáncer de piel en todos los tonos de piel

• Evita el sol directo, especialmente entre las 10 de la mañana y las 4 de la tarde.

• Utiliza todos los días un protector solar de amplio espectro con un FPS de 30 o superior. Vuelve a aplicarlo cada dos horas o después de nadar o de realizar alguna actividad con sudoración.

• No dejes el protector solar en el auto, porque las fluctuaciones de temperatura pueden hacer que se descomponga y pierda eficacia.

• Lleva ropa que cubra los brazos y las piernas.

• Utiliza un sombrero de ala ancha para proteger la cara, las orejas y el cuello.

• Utiliza gafas de sol con filtro UV.

• Evita las camas de bronceado en interiores.

• Examina la piel de la cabeza a los pies cada mes. Busca manchas o parches oscuros, o formas que crezcan, sangren o cambien de tamaño; llagas que tardan en curarse, o que se curan y vuelven a aparecer; parches de piel que se sienten ásperos y secos; y líneas oscuras debajo o alrededor de las uñas de las manos o de los pies. Revisa con diligencia los lechos ungueales (la piel debajo de la uña), las palmas de las manos, las plantas de los pies, la cabeza, la parte inferior de las piernas, la ingle y otros lugares que reciben poco sol. Ponte en contacto con un médico si tienes alguna duda.

• Haz cita con un dermatólogo al menos una vez al año para que te haga un examen de todo el cuerpo.

Fuentes: Skin Cancer Foundation, American Academy of Dermatology, Dr. Janiene Luke, Dr. Michelle Henry, Katonya Breaux.

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