“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 21% in 2005 to 12% in 2021 and smoking is banned in at least some public spaces in 35 states, the District of Columbia, and U.S. territories. Still, 13 of the 22 states and territories 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 record-breaking revenues in 2022 for in-person casino gambling beyond the growth of sports betting and online gambling.

Casinos were shut down 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 pandemic-era losses, some casino executives, and at least one union representing workers, leaned into a 2021 report 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 didn’t pass their bill and Pennsylvania’s remains in limbo.

Brian Christopher, 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 repealed a 2020 ban on smoking in casinos. Those pushing the repeal said local gambling taxes fell when gamblers left for nearby casinos where they could smoke. The new ordinance allows smoking on 75% of the casino floor.

And Churchill Downs Inc. announced in June it was moving a gambling facility 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 Messenger-Inquirer newspaper that a primary reason for the move was the city’s long-standing voter-approved smoking restrictions, which do not exempt casinos.

Kanika Cunningham, 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 Penn Entertainment, a compromise was reached 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 KFF 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 2023 report from the American Society of Heating, Refrigerating and Air-Conditioning Engineers, or ASHRAE.

A study published in 2023 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, one study showed, workers can have nicotine levels as much as 600% higher than employees exposed to smoking in other workplaces.

Secondhand smoke 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, according to the National Cancer Institute.

The pandemic raised awareness of the dangers of airborne particulates, giving smoking bans fresh momentum, said Andrew Klebanow, co-founder of the independent industry consulting group C3 Gaming, which produced a report in 2022 largely refuting the economic risk of casinos going smoke-free.

Indeed, more than 1,000 U.S. casinos and other gambling properties now ban smoking, 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 Denis Floge, chief executive of Acoma Business Enterprises and Sky City Casino 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 Casino Employees Against Smoking’s Effects.

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 lost 90% of her amniotic fluid. 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 less likely than women from other racial groups to carry a pregnancy to term — and in Harris County, where Houston is located, when they do, their infants are about twice as likely to die 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 Barbie Robinson, 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 Health Resources and Services Administration. Those three counties, which also are among the nation’s most populated counties, account for 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 more deaths that would not occur if Black babies had the same chance of reaching their 1st birthdays as white infants.

No known genetic reasons 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, according to a study 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 Texas Medical Center — 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 hasn’t reassured pregnant Black patients that they can find care that is timely, appropriate, or culturally competent — care that acknowledges a person’s heritage, beliefs, and values during treatment.

Regardless of income or insurance status, studies show, medical providers often dismiss Black women’s questions and concerns, minimize their physical complaints, 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 were halved 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 Shades of Blue Project, 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 connection between evictions and infant mortality.

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 20% of those younger than 65 — lacking coverage, said Anne Dunkelberg, a senior fellow with Every Texan, 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 covid-19 pandemic protections end for Medicaid.

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

Texas had the lowest percentage of mothers 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 born without prenatal care 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 incompetent cervix, 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 oleada de leyes que restringen la prestación de servicios de salud para personas transgénero.

Missouri, Florida y Texas se encuentran entre al menos 20 estados que han limitado la atención de afirmación de género para jóvenes trans. Los tres estados también están entre aquellos que impiden que Medicaid, 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 KFF y The Washington Post 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 protege de demandas a las personas que reciben o brindan 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 campaña de GoFundMe 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 aprobó una ley 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 tiroteo masivo del 6 de mayo 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 norma de emergencia 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 campaña de GoFundMe 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 restringió el acceso a estos tratamientos 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 aprobó una ley en enero 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 requiere que Medicaid 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 raft of legislation across the country restricting health care for transgender people.

Missouri, Florida, and Texas are among at least 20 states that have limited components of gender-affirming health care for trans youth. Those three states are also among the states that prevent Medicaid — 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 KFF and The Washington Post 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 protect those receiving or providing gender-affirming care 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 GoFundMe campaign 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 passed a law 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 May 6 mass shooting 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 issued an emergency rule 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 GoFundMe fundraiser 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 restricted new access 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 passed a law in January 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 requires Medicaid to cover 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 la enfermedad que acabó con la vida de la estrella del reggae Bob Marley a los 36 años, 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 20 veces más frecuente en las personas blancas que en las afroamericanas, 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 doctora Janiene Luke, de la Skin of Color Society, 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 informe de los Centros para el Control y Prevención de Enfermedades (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 la Sociedad Americana del Cáncer.

Dadas las disparidades conocidas en los resultados, la doctora Valerie Harvey, 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 datos más recientes, 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 Michelle Henry, 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 Susan Taylor, 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 Academia Americana de Dermatología (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 VisualDX busca reducir las disparidades en medicina a través del Project Impact, 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.

Jorge Martínez-Bonilla, vicepresidente y socio de la empresa de estudios de mercado de Chicago C + R Research, 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”.

Katonya Breaux 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 Unsun Cosmetics. La empresa, con sede en Los Angeles, educa sobre el cuidado de la piel y vende productos diseñados para consumidores de piel oscura.

Shontay Lundy 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 Black Girl Sunscreen.

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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Shelton had been taking medication for months for what her doctor said was toenail fungus, but one nail still looked gross.

After Shelton completed her purchase, the woman pulled her aside and said that, while she wasn’t a doctor, she thought Shelton was dealing with something more serious than fungus.

“She’s like: ‘I know I’m just a random stranger, but please, go get it checked out by someone else,’” said Shelton, who lives in a Maryland suburb of Washington, D.C.

Shelton, now 42, took the advice.

The initial lab work didn’t give a clear diagnosis, but her new doctor said he was confident she had acral lentiginous melanoma, a form of skin cancer. Additional testing proved him right. While rare, it is the most common subtype of melanoma in Black people, like Shelton. It is the disease that killed reggae star Bob Marley at age 36, and is most often found on skin less frequently exposed to the sun, such as the hands, the soles of the feet, and under nails. Researchers do not understand what causes acral lentiginous melanoma, and they don’t know how to prevent it. It is often overlooked in skin checks or misdiagnosed.

Skin cancer, in general, is often missed or misdiagnosed in Black patients.

Historically, Black people and those with dark skin have been left out of efforts to combat skin cancer. Long neglected by sunscreen manufacturers and a medical community lagging in diversity and cultural competency — the acknowledgment of a patient’s heritage, beliefs, and values — many have not been informed about sun safety or how to check their skin for signs of damage or cancer.

To be sure, skin cancer rates are lower for people with dark skin tones. Melanoma is more than 20 times as common in white people as in African Americans, with an overall lifetime risk of 1 in 38 for white people compared with 1 in 1,000 for Black people. Melanin does provide some protection against sun damage, so those with more of it — those with darker skin — are better protected than those with fairer skin.

But overall, Black patients are more likely to be diagnosed with various forms of skin cancer at more advanced stages, said Dr. Janiene Luke, with the Skin of Color Society, a nonprofit that works to educate doctors and the public on skin health.

The five-year melanoma survival rate among non-Hispanic Black people is 66%, compared with 90% for non-Hispanic white people, according to a report by the Centers for Disease Control and Prevention. And 1 in 3 Black men or women diagnosed with melanoma in the U.S. die of the disease, compared with at least 1 in 7 for non-Hispanic white people, says the American Cancer Society.

Given the known disparities in outcomes, Dr. Valerie Harvey, president of the Skin of Color Society, said two areas of research are needed: studying educational initiatives to see if awareness might lead to earlier diagnosis and improved survival; and determining risk factors in patients with dark skin, especially factors leading to the occurrence of melanoma in places less exposed to the sun.

Improving cultural competency and diversity within dermatology is just one step toward improving diagnosis and outcomes. According to the most recent data, fewer than 3% of dermatologists nationwide are Black. Orthopedics is the only medical specialty with a smaller share.

Dermatology has traditionally been one of the most competitive specialties in medicine, said Dr. Michelle Henry, a clinical instructor of dermatology at Weill Cornell Medicine. In addition to stiff academic requirements, admission to dermatology programs also depends on connecting with mentors and extensive networking, which can be expensive. And that, Henry said, has traditionally created barriers for Black medical students who want to pursue dermatology.

“There are so many hurdles that make it difficult for a lot of students of color to do the things that they need to do in such an uber-exclusive and small space,” she said.

Recent initiatives to help students overcome those barriers are beginning to work, said Dr. Susan Taylor, vice chair for diversity, equity, and inclusion in the dermatology department at the University of Pennsylvania and founder of the Skin of Color Society. Initiatives from the American Academy of Dermatology include holistic reviews of residency applications, mentorships, and programs to increase interest among and prepare high school students for college and medical school.

Medical app company VisualDX is working to reduce disparities in medicine through Project Impact by creating a catalog of images reflecting various diseases in different skin colors. Skin cancers may appear different on fairer skin than on darker skin, and because doctors may have been trained only with fair-skin depictions, the chance for misdiagnosis in people with dark skin increases.

Change has also come to the sunscreen industry.

Jorge Martínez-Bonilla, senior vice president and partner with Chicago market research company C + R Research, said failures within the medical community to provide adequate skin care for people with dark skin mirror the lack of availability of sunscreens to meet patients’ needs, especially for Black people.

“What that has done is that it has pushed Black entrepreneurs, from one day to the next, to come up with their own solutions and their own products,” Martínez-Bonilla said. “Not only from the lack of availability, but because these are the people who know their needs best.”

Katonya Breaux is one of those entrepreneurs. She wasn’t thrilled when, in her 30s and 40s, she noticed she was getting moles on her face and neck similar to those she’d seen on older family members while she was growing up. She assumed it was just part of aging. But her dermatologist said it was sun damage.

“I was, literally, shocked. I was like: ‘But I’m Black,’” she said, adding that she had no experience with sunscreen growing up. “It was so foreign to me. I believed we just didn’t need it.”

After struggling to find a sunscreen that didn’t leave a residue or feel like it was burning her skin, she worked with a chemist who helped her create a tinted mineral-based sunscreen. At first, she intended it just for her personal use, but she ultimately launched Unsun Cosmetics. The Los Angeles-based company educates about skin care and sells products designed for consumers with dark skin.

Shontay Lundy also struggled to find a sunscreen that didn’t “leave a blue, purple, or other-colored hue on my skin.” Until, she said, “I realized it didn’t exist.”

So, in 2016, she developed products that left no residue, ultimately launching Black Girl Sunscreen.

Education is fundamental to her company’s advertising, Lundy said. “Our mission is to equip people of all ages and skin tones with the right sunscreen products to take their skin health seriously and protect themselves from sun damage.”

Shelton, whose chance encounter in a store’s checkout line led to her cancer diagnosis, said she has become an evangelist for skin self-checks and sunscreen, and is now known at her local pool as “the sunblock lady.” The kind of skin cancer she had may not have stemmed from sun exposure, but it increased her awareness about skin damage and other types of skin cancers.

She has been cancer-free since the doctor successfully removed the tumor on her toe and she underwent chemotherapy and radiation. But the experience was traumatic.

“It’s life-altering,” she said.

Still, she said, she’s resumed an active and full life. She said she will forever be grateful to the stranger who pulled her aside that day, as well as the doctor who disbelieved the first set of labs that came back, opting instead to trust his instincts to immediately begin treatment.

Tips for Avoiding Skin Cancer for All Skin Tones

• Avoid direct sun, especially between 10 a.m. and 4 p.m. Keep babies out of the sun entirely.

• Use a broad-spectrum sunscreen with an SPF of 30 or higher every day. Reapply every two hours or after swimming or activity/sweating.

• Don’t leave sunscreen in the car, because temperature fluctuations can cause it to break down and become less effective.

• Wear clothing that covers arms and legs.

• Wear a broad-brimmed hat to protect the face, ears, and neck.

• Wear UV-blocking sunglasses.

• Avoid indoor tanning beds.

• Examine skin from head to toe every month. Look for dark spots or patches, or growths that are growing, bleeding, or changing; sores that are slow to heal, or heal and return; patches of skin that feel rough and dry; and dark lines underneath or around fingernails or toenails. Be diligent in checking nail beds, palms, soles of the feet, the head, lower legs, the groin, and other places that get little sun. Contact a doctor if you have any concerns.

• See a board-certified dermatologist at least once a year for a full-body examination.

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

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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After taking reversible puberty blockers that pause a teenager’s body changes, Cameron considered whether he wanted to begin hormone therapy to physically transition more permanently. He did not take the decision lightly. Cameron said his doctor made him spend almost a year mulling over the question, working with his therapist, and thinking through the life-altering implications before the doctor believed he was ready to start taking the medications in 2020.

“I thought about if I stayed a girl, life would be so much easier,” said Cameron, who uses the pronouns he and him. “But this is what I want, and I’m not going to let anything stop me from being who I want to be, whether it’s hard or not.”

Then in November 2021, the GENder Education and Care, Interdisciplinary Support clinic in Dallas, known as Genecis, stopped taking new patients for gender dysphoria hormone treatment because of pressure from Republican activists and politicians. Although doctors can continue to see patients like Cameron whom they were already treating, the clinic was dismantled. Cameron and his family now have concerns about what this means for them.

The Texas attorney general, Ken Paxton, also opened investigations into pharmaceutical companies whose products are used by transgender patients, and Republican Gov. Greg Abbott and the state GOP are increasingly focusing legislative and reelection efforts on a record number of bills that target transgender young people, their parents, and their doctors.

Since then, Texas Children’s Hospital in Houston announced it would stop offering hormone therapy. The Texas Tribune reported that Legacy Community Health, also in Houston, quietly paused hormone therapy for teens as well. And doctors throughout the state are telling patients they will no longer prescribe the medications under pressure from insurance companies.

Transgender young people and their families across Texas are now scrambling to find providers and maintain access to their medications, with some exploring options outside the state. An estimated 17,000 transgender people ages 13-17 live in Texas, according to Equality Texas, an LGBTQ+ education and advocacy organization.

For Chloe Ross, 15, who uses the pronouns she and her, the crackdown on her care has been distressing. “I’m just as human as everyone else,” she said.

Chloe’s doctor is still seeing her and prescribing her hormones. But her mother, Kathryn Ross, has started researching options for out-of-state care. The family has been saving money in case they need to move, Ross said, but they hope it doesn’t come to that.

“Having just moved, and Chloe making good friends, the last thing we want to do is uproot her,” said Ross. “Moving would be the last option.”

During the pandemic, the family relocated to a larger city within Texas, leaving behind bullies, and the teen found acceptance from new schoolmates who know her only as Chloe, someone who loves theater and wants to study genetics. But Abbott’s orders to investigate parents who allow their children to receive gender-affirming care, and legislative threats to criminalize such care, weigh heavily on Chloe.

“I’m just trying to get through high school and stuff,” Chloe said through tears. “Having Gov. Abbott make me worry about that kind of stuff is terrible because I don’t get a normal life anymore, you know? Right now, I’m having to go to my teachers to ask them to please not turn me in for being trans. I shouldn’t have to worry about something like that.”

For as long as she can remember, Chloe said, she has favored wearing jewelry, playing volleyball, and participating in theater. She did not know how to express what she was feeling and thought she was gay. Chloe and her mom said strangers regularly assumed Chloe was a girl even as she presented as a boy and had not yet come out as transgender.

Echoing other parents, Chloe’s mother said that even though she was already deeply involved in LGBTQ+ support and advocacy, Chloe’s coming out as transgender was a “gut punch.” Never once did she disbelieve Chloe, but she feared for her daughter’s future. She feared for what is happening now.

Young people receiving gender-affirming care include those who are socially transitioning — for example, wearing clothing that reflects their gender identity — and those taking puberty blockers or hormones.

Not all young people who identify as transgender, however, move beyond social transitioning or experience the condition known as gender dysphoria, which means that they experience psychological stress when their body doesn’t match their identity. And people who take puberty blockers don’t necessarily decide to take gender hormones. Surgery is not recommended for people younger than 18.

Although gender-affirming care for trans young people remains politically controversial in many parts of the U.S., a study published by JAMA Network Open showed a reduction in suicidal ideation in trans youths who received such care. Health care organizations that include the Endocrine Society, the American Academy of Pediatrics, and the American Medical Association endorse gender-affirming health care.

Despite the changes to Genecis, Cameron is scheduled for a May appointment with Dr. Ximena Lopez, the doctor overseeing his care. His mom, Myriam Reynolds, however, worries it won’t take place. Lopez has filed a lawsuit against UT Southwestern Medical Center, which jointly operated Genecis with Children’s Medical Center Dallas, alleging that the facility discriminated against some patients by preventing them from receiving gender-affirming care based on their gender identity.

In the meantime, Reynolds picks up Cameron’s hormone refills as soon as they are available to maintain a constant supply. She also said the family is considering all options to ensure Cameron can continue receiving care despite the state crackdown.

“They don’t care at all about trying to help my kid,” Reynolds said. “It’s all political theater.”

It’s especially hard because access to Genecis was a consideration when the family decided to relocate from Colorado to Texas in 2017. Cameron had already come out as transgender, and, after researching the clinic, his mother believed he would receive compassionate, thoughtful care as he transitioned. Now the family is concerned about what kind of care Cameron will be able to get in Texas.

Cameron, who hopes to study music production or become a firefighter, tries to be optimistic that politicians will stop cracking down on medical care for people like him.

“I can’t control the way I am,” said Cameron. “This is not my mom’s doing or my doctor’s doing. This is just me trying to be myself.”

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But bills with language expanding religious exemptions for childhood vaccine requirements were passed by the state Senate in March and now face the House when the legislature reconvenes April 25.

They are among the more than 520 vaccine-related bills introduced in statehouses nationwide since Jan. 1, according to data from the National Conference of State Legislatures. Of those bills, 66 specifically relate to childhood vaccine requirements in 25 states.

In Missouri, for example, legislators are considering a measure exempting private school students from vaccine requirements. In Louisiana, a bill in the House would prohibit vaccinations on school property and at school-sponsored events.

Fewer than 10% of the bills will likely gain any traction, but the volume of attempts to roll back vaccine requirements is alarming, said Rekha Lakshmanan, director of advocacy and public policy at the Immunization Partnership, a vaccine education organization.

“Those are all chipping away at one of the end goals for anti-vaccine activists, which is completely doing away with school requirements,” said Lakshmanan. “That’s what people need to be paying very close attention to.”

All states require specific childhood vaccinations for illnesses such as polio, measles, and mumps, but exemptions vary. They all allow exemptions for people with medical concerns, 44 states allow religious exemptions, and 15 allow philosophical exemptions, according to 2021 data from the National Conference of State Legislatures.

Vaccinations are central to public health efforts at disease control and are foundational to the country’s social and economic system, said Brian Castrucci, CEO of the de Beaumont Foundation, a public health advocacy organization.

“Politicians are poking holes in our public safety net,” Castrucci said of the onslaught of anti-vaccine legislation. “Vaccines, in and of themselves, are not medicine. It’s all of us collectively protecting each other.”

To be sure, anti-vaccine activists have existed as long as vaccines. And legislation to limit requirements to vaccinate against diseases such as polio, measles, and meningitis are not new. But, according to public health experts, the movement has gained momentum amid the coronavirus pandemic, boosting the reach of high-profile anti-vaccine activists.

“If you had told me that a pandemic — and what I would consider a miraculous vaccine for that disease — would trigger an anti-vax surge, I would never have believed it,” said Tracy Russell, executive director of Nurture KC, which works to improve children’s and family health in the Kansas City area of Missouri and Kansas. “But that’s exactly what happened.”

One pending Kansas bill would mandate that vaccine exemption requests be accepted without scrutiny if based on religion or personal beliefs. Currently, the state leaves it to day care centers and school districts to accept requests for religious exemptions.

State Sen. Mark Steffen stands behind amendments he pushed nullifying Kansas’ childhood vaccine requirements. The Republican, who said he is “not an anti-vaxxer in any shape or form,” lamented mandates he said were a vestige of a “kinder, gentler time” and suggested that individual rights supersede mandates designed to protect public health.

Steffen, an anesthesiologist who said he is under investigation by the Kansas Board of Healing Arts for prescribing ivermectin to covid patients, said suggestions that a resurgence of vaccine-preventable diseases could occur if vaccination rates fall amount to fearmongering by people paid off by the pharmaceutical industry.

But Andy Marso, a Kansas vaccine advocate who launched a Facebook page to organize pro-vaccine Kansans, called such assertions insulting and said he doesn’t take any money from drug companies. He contracted meningitis B in 2004 before vaccines against it were available. He was in a coma for three weeks and had parts of all four limbs amputated.

“For me, this has been part of what helped me move on from that trauma,” Marso said. “I have a story that people need to know about.”

The legislative efforts to nullify the requirements fly in the face of widespread public support for vaccines and vaccine mandates, nationally and in Kansas, said Russell. More than 9 in 10 Kansas voters believe wellness vaccines are safe and support vaccine requirements, according to a survey conducted this year for Nurture KC. Kansas voters overwhelmingly support religious exemptions, but a majority say they support tightening existing exemptions, according to the survey.

Before the pandemic, outbreaks of measles in Kansas, Minnesota, Washington, and other states, as well as outbreaks of pertussis, had reinforced the idea that preventing disease spread required consistently high vaccination rates. And mandates, in part, helped create the mechanism for public health authorities to make vaccines widely available and accessible, said Erica DeWald, spokesperson for Vaccinate Your Family, an advocacy organization.

“Lost in what has become a political conversation around requirements is the danger of these vaccine-preventable diseases,” said DeWald. “All it takes is one case.”

Previously, anti-vaccine activists relied on long-since-debunked narratives that vaccines cause autism, said Renée DiResta, the research manager of the Stanford Internet Observatory, which studies cyber policies and how people use the internet. But in the years leading up to the pandemic, the movement began to shift its focus to align more with the populist ideology of “individual freedoms” put forward by Second Amendment advocates and the tea party.

Donald Trump expressed vaccine skepticism long before becoming president. But it was when the then-president was said to be considering naming Robert F. Kennedy Jr., a well-known anti-vaccine activist, to “investigate” vaccine safety that the movement found its footing, said Timothy Callaghan, assistant professor in the health policy and management department at Texas A&M University. The embrace of anti-vaccine messaging by prominent politicians — whether because they are “true believers” or just see it as political necessity — has “lent legitimacy that the movement lacked before,” Callaghan added.

The similarity of bills from state to state raises red flags to vaccine advocates because it suggests that a coordinated effort to dismantle vaccine requirements and public health infrastructure is underway.

“Because the anti-vax movement is becoming aligned with the far right, I think those information-sharing channels are becoming more sophisticated,” said Northe Saunders, executive director of the SAFE Communities Coalition, a pro-vaccine organization. “Their ability to attract far-right politicians who see vaccines as a cause has grown. That gets them attention, if not votes.”

Not all Republicans find common cause with anti-vaccine activists, said Kansas state Rep. John Eplee, a Republican and family physician. He said he voted against some covid-related restrictions, like a statewide mask mandate, because he believed doing so might help defuse pandemic tensions. But he advocates for all vaccines, including covid shots.

Enough others in the Kansas legislature agreed in the case of one bill: Language targeting vaccines, under the auspices of parental rights, was ultimately removed before it was passed. Some observers are cautiously optimistic the House won’t pass the other bills as written.

While Eplee hopes the “passions” inflamed by covid die down with distance from the early days of the pandemic, he’s concerned that voters have forgotten the damage done by vaccine-controllable diseases, making them susceptible to disinformation from determined anti-vaccine activists and the politicians among their ranks.

“I hate to see human nature play out like that,” said Eplee. “But if people are vocal enough and loud enough, they can swing enough votes to change the world in a not-so-good way for public health and vaccinations.”

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Still, it was especially painful last year, Apple said, when Texas lawmakers used the same sort of dehumanizing language he’d heard on the playground as they debated whether to deny trans kids everything from participation in sports to gender-affirming medical care.

“Seeing these people who are supposed to protect you, who are supposed to make laws to protect children, say all these horrible things and make it clear that you are not worth fighting for?” said Apple, 18, who testified with his parents against several anti-trans bills in Texas. “That’s a whole different thing.”

State legislators across the country introduced a record number of anti-transgender bills in 2021, many specifically targeting trans youth. Texas lawmakers proposed nearly 50 such bills, including an unsuccessful bill that could have sent parents to prison and placed their children in foster care if they approved gender-affirming treatments. In the first week of 2022 alone, legislators in at least seven states proposed bills targeting LGBTQ+ youth. On Feb. 3, South Dakota Gov. Kristi Noem signed a bill banning transgender girls and college-age women from playing on female sports teams. It becomes the 10th state to pass such a ban.

The debate isn’t limited to the United States. In 2020, three judges from the United Kingdom’s high court ruled against the use of puberty blockers for those 16 and younger, saying it was unlikely youth could give informed consent. The decision was overturned in September 2021.

As health care providers continue to discuss best practices, the larger debate outside of medicine amid these legislative efforts to restrict access to care is having a detrimental impact on transgender youth, said Dr. Aron Janssen, vice chair of Lurie Children’s Hospital’s psychiatry and behavioral health department in Chicago.

“These are kids who are already quite vulnerable. We know that suicide rates among transgender youth are incredibly high,” Janssen said. “We would anticipate that legislative efforts that are created to reduce access to lifesaving care are going to have negative consequences.”

In a survey from the Trevor Project conducted last fall, 85% of LGBTQ+ youth reported that recent debates about anti-trans bills have negatively affected their mental health. In a survey conducted in 2020, the nonprofit that serves LGBTQ+ youth and focuses on crisis intervention found 42% of LGBTQ+ youth reported seriously considering suicide in the previous year, including more than half of transgender and non-binary youth.

“What I am concerned about is that something that is doing significant and documented harm to the health and well-being of LGBTQ youth is being seen as a highly effective political tactic and means of fundraising,” said Casey Pick, a senior fellow for advocacy and governmental affairs at the Trevor Project. “It scares me that LGBTQ youth are being sacrificed to a political process.”

In the past year, Pick said, the Trevor Project’s lifeline and digital crisis services had more than 200,000 calls, emails, and texts from across the country — about 14,500 of them coming from Texas.

Mary Elizabeth Castle, a senior policy adviser for Texas Values, a faith-based advocacy organization that has worked to advance legislation banning gender-affirming care, said more bills are coming.

“Our position at Texas Values, and with our research, is that kids should not have access to any puberty blockers, cross-sex hormones, or any gender transition surgeries,” she said. “A lot of these kids claiming they are going through gender dysphoria are dealing with the normal problems preteens face, just realizing themselves and finding their identity.”

Numerous medical associations, including the American Academy of Pediatrics, the American Medical Association, the Pediatric Endocrine Society, and the American Psychiatric Association, have endorsed gender-affirming care.

The amped-up political heat has caused repercussions. The Texas Department of Family and Protective Services removed from its website a resources page for LGBTQ+ youth that included information about suicide prevention and the Trevor Project hotline after criticism from a conservative Texas gubernatorial candidate. At least one Texas school district reportedly also blocked access to LGBTQ+ resources, such as the Trevor Project, but reinstated some of them after students protested.

Those pullbacks are especially concerning, said Pick, because LGBTQ+ kids are overrepresented in the child welfare system and are less likely than other children to have access to appropriate mental health and medical care or internet access outside of school or child welfare agencies. Compared with their peers, LGBTQ+ kids who have been in foster care also are more likely to report attempting suicide, according to the Trevor Project.

“Regardless of what they think about trans youth, and whether it’s real or not, you’d think they would want to prevent suicides,” said Laura Edwards-Leeper, an Oregon clinical psychologist who helped found a U.S. clinic offering assessment and medical interventions for transgender youth. “If they really cared about young people, they would be putting their energy into allocating more resources to areas that are lacking in the field.”

Edwards-Leeper has advocated for improved training for therapists and increased diligence in exploring mental health concerns beyond gender identity before a patient begins medical interventions such as puberty blockers and cross-sex hormones. But, she said, medical intervention is appropriate for some youth.

“My feeling is that these things, especially the treatment of these kids, should not be left up to the courts or lawmakers,” said Edwards-Leeper. “It should really be in the hands of mental health and medical providers who are trained to do that work.”

Dr. Jason Rafferty, a Rhode Island pediatrician and psychologist who authored a 2018 American Academy of Pediatrics policy statement on supporting trans kids, said current political rhetoric and legislation are not grounded in science. Medical protocols for transgender people are not new, he said, adding that politicizing the delivery of medical care to transgender youth is both inappropriate and damaging.

“By taking away books or banning websites, you can’t erase people’s experiences,” he said. “Kids are still feeling what they are feeling; they’re now just feeling more isolated and alone and won’t have those references to help normalize their feelings as part of the human experience. That’s scary when we’re talking about emotional and psychological health and development.”

In Tucson, Arizona, Lizette Trujillo, who has a 14-year-old transgender son, said she is well versed in overcoming societal barriers as the American-born daughter of Mexican immigrants. But when her son came out as transgender, she and her husband worried their child would be further marginalized.

Trujillo has learned how to locate safe businesses and neighborhoods for her son. Still, he has dealt with anti-trans slurs at school. And, she said, it is increasingly difficult.

“There is this exhaustion and this disappointment that we are still having these same conversations and these same fights over and over,” said Trujillo.

Ultimately, the legislation and surrounding discourse targets children, said Dr. Terrance Weeden, an adolescent medicine fellow at Lurie Children’s Hospital.

“This is just who these children, these youth, are,” said Weeden. “They did not wake up one morning and decide ‘Hey, I want to be part of this community that’s ostracized, looked down upon, made fun of, that’s isolated.’”

Despite concerns about the impact of future legislation and surrounding rhetoric on LGBTQ+ youth, Apple remains hopeful things can improve.

“I am a human being and I am also trans,” he told KHN. “I am a mosaic of experiences and identities, with joy and sorrow and happiness and love, just as you are. Seeing us as the multifaceted human beings that we are is the first step in fighting this.”

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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What is known is that with every pot of boiling sweet potatoes, bottle of reconstituted baby formula or sip of tap water delivered through lead pipes, millions of Americans risk ingesting lead, a powerful neurotoxin long known to cause irreversible organ and cognitive damage in children and adults.

“As a starting point, we don’t even fully know the extent of all this, even though because of situations like Flint and other places, we know it’s real,” said Joseph Kane, a fellow at the Brookings Institution who focuses on infrastructure.

Now, he and other experts say, the nation can finally start to make a dent in the problem. The bipartisan infrastructure bill that Congress approved Friday calls for allocating $15 billion for lead pipe remediation. An additional $9 billion to help with lead reduction in disadvantaged communities and $970 million for rural water and waste-water programs, including lead remediation, are still on the table as part of the pending reconciliation spending bill to fund President Joe Biden’s social and climate agenda.

While some say the infrastructure bill is not enough — industry experts and environmental advocates estimate the actual cost of fully replacing lead pipes could be $60 billion — others believe the infrastructure package will bring significant change.

“Is this better than nothing? Absolutely, 100%,” said Scott Berry, director of policy and government affairs at the US Water Alliance, a nonprofit focused on sustainable water policies. “This is going to be transformative for some communities.”

The lead-poisoned water in Flint, Michigan, elevated the issue of lead pipes to national attention in 2015. But some places, such as Houston’s Fifth Ward neighborhood that is saddled with other environmental hazards amid aging homes, are just beginning to track the plumbing contamination.

Lead service lines were banned nationwide in 1986, but fixing this largely underground problem has been taking longer than community and environmental advocates would like.

Earlier this month, before the infrastructure bill passed, the EPA ordered the city of Benton Harbor, Michigan, to take “immediate action” to improve its drinking water system after several years of inaction on high lead levels. Illinois recently established a 50-year timeline to replace all lead service lines, including in Chicago, which has the most of any U.S. city with an estimated 400,000 lines.

After the Flint water crisis, officials with Greater Cincinnati Water Works developed a plan to remove lead pipes; the city provided financial assistance to property owners for their share of the project. When fewer owners than expected signed up, city leaders agreed to cover the full cost, said Jeff Swertfeger, superintendent of water quality. Officials hoped to complete the project in 15 years — until the bill passed.

“That will allow us to do it more quickly,” Swertfeger said, if his city gets some of the money.

The EPA said in 2012 that there is no safe level of lead exposure. However, rules governing allowable levels in drinking water have been largely unchanged since 1991, said Adrienne Katner, an associate professor of environmental and occupational health at Louisiana State University.

Katner said when blood lead levels fell following bans on lead in paint and gas, many Americans — including medical professionals — thought the problem of lead poisoning was largely solved. She said that mindset has continued to this day.

“But the lead story isn’t over,” Katner said. “Because we’ve created cities that are pretty much hazardous waste sites now because of the amount of lead we put in the environment.”

Lead-based paint and lead-contaminated dust continue to be primary sources of lead exposure, but the reality is that lead in water poisons children and adults at troubling rates. The EPA estimates that, for the general public, drinking water can account for 20% or more of lead exposure. Infants who drink reconstituted formula can receive up to 60% of their lead exposure from the water.

“Lead pipes are unpredictable,” said Tom Neltner, chemicals policy director at the Environmental Defense Fund, a science-based environmental advocacy organization. “One day they can be low and later really high. It may be flow, water chemistry, temperature or something else. That is what makes them particularly hard to manage safely — and why replacing them is so important.”

Lead accumulates in the body over time. It is known to cause organ damage and reduce impulse control, IQ and cognitive abilities in children. It can cause fertility issues. For those who are calcium-deficient while pregnant, it can leach from the bones and cross the placental barrier, exposing the fetus to lead. In adults, it can cause liver damage and cardiovascular disease.

While lead-contaminated water can affect all populations, low-income and minority communities are hit the hardest, Katner said. Many of those communities exist in older, more industrialized and more polluted areas in any given city, where residents are less likely to have the financial resources or political clout to get lead pipes removed.

“There are many communities of color, Black and brown communities specifically, that because of policies that have resulted in segregation and environmental racism, are cumulatively disadvantaged,” said Grace Tee Lewis, a senior health scientist with the Environmental Defense Fund.

Houston’s Fifth Ward, in the shadow of downtown Houston’s gleaming office towers and expensive condos, is faced with numerous environmental and health challenges. Within its borders sit three Superfund sites, chemical plants, metal recyclers and cement plants. Two cancer clusters have been identified there.

The Rev. James Caldwell formed the nonprofit Coalition of Community Organizations to help residents there tackle health, environmental, economic and social issues. In 2019, the Houston Health Department gave Caldwell’s group a map identifying homes and businesses with potential lead-based paint contamination. Because those homes were likely built before 1978, the year lead paint was banned nationally, and aging infrastructure was already an issue, it seemed possible that lead service lines were delivering water to the area, too.

“We don’t know if we have people in our community bathing in lead water, drinking lead water, pouring the water in their plants, on their food — and they don’t know,” Caldwell said. “That’s a problem.”

The Coalition of Community Organizations created a working group of residents and experts to sample water, soil and dust for multiple particulates — including lead — from homes throughout the Fifth Ward. Leanne Fawkes, a doctoral candidate in Texas A&M University’s School of Public Health who is working on the project, said so far about 30% of water samples collected from 200 homes show elevated lead levels.

“I would just like more Houstonians to be aware that this was happening in their backyard,” she said.

The city’s Public Works department has been conducting a separate public survey to help determine locations throughout the city to target for water testing, said city spokesperson Erin Jones.

The Environmental Defense Fund’s Neltner said it’s imperative to raise awareness nationwide that these pipes and plumbing fixtures pose dangerous health concerns. Removing them will not eliminate the risk of lead-contaminated drinking water, but what potentially remains will be more easily managed with proper mitigation, he said.

Now that the infrastructure bill is approved, he said, the priority must be on ensuring low-income communities, where residents have the fewest resources to participate in fixing the problem, have access to the funds.

“If you’re drinking water through a lead straw, while that might be safe right this moment, the next moment it’s not,” Neltner said. “People need to be confident that their water is safe.”

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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