Category: Health Care

Being Black and Pregnant in the Deep South Can Be a Dangerous Combination

O’laysha Davis was a few weeks shy of her due date when in mid-August she decided it was time to switch doctors.

Davis had planned to give birth at a small community hospital about 20 minutes from her home in North Charleston, South Carolina. But that changed when her medical team started repeatedly calling her cellphone and pressuring her to come to the hospital and deliver the baby.

Davis said she’d told her doctor on more than one occasion that she was opposed to inducing labor early. Eventually, she reached her wits’ end.

“It was ridiculous,” said Davis, 33. “I don’t feel heard most of the time. I feel like it’s their way or no way, you know? Like you don’t have a choice.”

Davis had given birth twice before and knew from experience that Black women, like herself, and their infants face higher health risks during pregnancy and childbirth. In 2021, Davis lost a baby in the womb after a dangerous pregnancy complication in her first trimester.

“I was very fearful that the same thing would happen,” Davis said when she found out in late 2022 that she was pregnant again.

Her fears weren’t unfounded. Across South Carolina, Black infant and maternal deaths are troubling. About an hour and a half northwest of Charleston in Orangeburg County, the infant death rate was the highest in the state in 2021. Higher, in fact, than it was 50 years earlier in 1971, according to data KFF Health News obtained via a Freedom of Information Act request from the state health department. All but one of the 17 infants who died in 2021 in Orangeburg was Black.

Statistics like this scared Davis. But it was a horror story out of Georgia that really caught her attention: In July, a Black infant was decapitated during delivery by an obstetrician who allegedly used excessive force. Davis was eight months pregnant when the news broke.

“Something’s terribly wrong,” she recalled thinking.

A close-up portrait of O'laysha Davis. Her face is slightly obstructed from view by a sheer curtain.
During the final weeks of her pregnancy, Davis repeatedly refused when her doctor wanted to induce labor. (Gavin McIntyre for KFF Health News)
O’laysha Davis holds hands with her daughter, Journee.
Davis ended up switching both doctors and hospitals, found a doula, and gave birth at the Medical University of South Carolina a few days before her due date. (Gavin McIntyre for KFF Health News)

‘Moving in the Wrong Direction’

Being Black has always been dangerous for pregnant women and infants in the South. The origin story of modern reproductive medicine can be traced to experiments conducted on Black enslaved women in Alabama during the 1840s by physician J. Marion Sims, the so-called Father of Gynecology, who subjected his patients to painful pelvic surgeries without anesthesia and drugged them with opium.

Sims, a native South Carolinian who is memorialized on the Statehouse grounds in Columbia, is credited with inventing an early version of the vaginal speculum, which he designed after probing an enslaved woman named Betsey with the bent handle of a spoon.

Fast-forward nearly 200 years, following a legacy of systemic discrimination that has prevented some Black families from getting health care: Poor outcomes for Black women and babies across the United States are alarmingly high compared with white patients.

These problems aren’t unique to the South. In places such as Kansas, Arizona, and Wisconsin, for example, Black infants die at more than double the rate of white babies. In Flint, Michigan, where more than half of residents are Black, the infant mortality rate for all babies in 2021 exceeded the rate in any Southern state.

But in Deep South states like South Carolina, Louisiana, and Mississippi, infant mortality rates in rural counties, especially for Black babies, often resemble those in much poorer parts of the world.

O'laysha Davis looks out a window in her home. A sheer curtain blows in the wind in front of her figure.
“I don’t feel heard most of the time,” Davis says. “I feel like it’s their way or no way, you know? Like you don’t have a choice.”(Gavin McIntyre for KFF Health News))

Things are poised to get worse. More than one year after the U.S. Supreme Court issued its decision in Dobbs v. Jackson Women’s Health Organization, allowing state legislatures to outlaw abortion, most states in the South have passed either full or partial bans. Both research and preliminary data suggest this will further jeopardize Black women and babies.

In 2021, 42% of all reported abortions in the United States were obtained by Black women, accounting for a larger share than any other race, according to KFF data. And more than half of all Black Americans live in the South, where many of the country’s strictest abortion policies were enacted this year and last.

Already, birth rates in states that banned or restricted access to abortion have increased since the Dobbs ruling. State-level abortion bans will undoubtedly prove fatal for some people, particularly Black women and children, who are more likely to die before, during, and after childbirth than white women and children.

“There is so much anger,” said Kelli Parker, director of communications and marketing for the nonprofit Women’s Rights and Empowerment Network. “This type of legislation uniquely impacts women of color and other historically marginalized groups.”

In Texas, for example, infant mortality data from the Department of State Health Services shows the number of babies who died during their first year of life significantly increased after lawmakers passed a six-week abortion ban in 2021, according to data obtained by CNN through a public records request. In Texas, Black babies die before their 1st birthday at a rate more than twice that of white infants. That’s because the health of the mother often translates to the health of the infant, and Black women face much higher pregnancy risks, such as high blood pressure, stroke, and hemorrhage.

In South Carolina, where the state Supreme Court upheld a ban that outlaws abortion if fetal cardiac activity can be detected, non-Hispanic Black infants are also more than twice as likely to die during their first year than non-Hispanic white infants. And the state’s Black infant mortality rate increased by nearly 40% from 2017 to 2021.

Meanwhile, non-Hispanic Black women in South Carolina experienced a 67% higher pregnancy-related mortality ratio compared with their white counterparts in 2018 and 2019, according to the latest data from the state’s Maternal Morbidity and Mortality Review Committee.

“We have a lot of work to do,” said Sarah Knox, senior director of policy and advocacy at the nonprofit Children’s Trust of South Carolina. “Unfortunately, our latest data shows we are moving in the wrong direction.”

Most states haven’t released infant and maternal death data that reflects the impact of the Dobbs decision. But maternal health experts aren’t optimistic.

A KFF survey conducted this year of 569 OB-GYNs found that most doctors reported the Dobbs decision has worsened pregnancy-related mortality and exacerbated racial and ethnic inequities in maternal health.

But Dobbs isn’t the only factor. Across the South, public health experts point to a confluence of things: the closure of rural hospitals, the scarcity of doctors and midwives, the pervasiveness of obesity and chronic disease, and many states’ refusal to expand Medicaid under the Affordable Care Act.

In many cases, though, the intersection of poverty and structural racism in medicine is to blame for the deaths of Black women and their infants.

A KFF survey released this week found Black patients regularly said their health care provider assumed something about them without asking; suggested they were personally at fault for a health problem; ignored a direct request or question; or refused to prescribe them pain medication they thought they needed. More than half of all Black respondents also said they prepare to visit their health care provider by expecting insults or by being very careful about their appearance — or both.

“People are tired of being bullied by their providers,” said Tiffany Townsend, a midwife and the owner of De la Flor Midwifery in Columbia, South Carolina.

In the KFF survey, Black women reported the highest rates of unfair treatment, with 1 in 5 saying a health care provider treated them differently because of their racial or ethnic background. And about twice as many Black adults who were pregnant or gave birth in the past decade said they were refused pain medicine they thought they needed compared with white adults.

The nation’s Black maternal mortality rate is almost three times as high as the rate for white women. Townsend, one of the few Black midwives practicing in South Carolina, said that’s because doctors often ignore their patients’ complaints until it’s too late.

“They don’t listen,” she said.

A portrait of infant Journee Davis in her mother's arms.
Davis had given birth twice before and knew from experience that Black women, like herself, and their infants face higher health risks during pregnancy and childbirth.(Gavin McIntyre for KFF Health News)

‘Using Their Voice’

In March 2012, Kim Smith was about 22 weeks pregnant when she felt an “unbelievable pain” in the upper-right side of her abdomen. She was immediately admitted to a hospital in Lexington, South Carolina, where she was diagnosed with HELLP syndrome, a severe case of a pregnancy condition called preeclampsia, which is marked by high blood pressure. She’d been tested for preeclampsia a few weeks earlier and the results were negative.

While the preeclampsia rate is much higher among Black women than white women, the diagnosis still came as a shock to Smith, who liked to run, taught aerobics classes in college, and thought of herself as a healthy person. She hadn’t considered the possibility of a high-risk pregnancy.

“I was placed in a wheelchair and rushed to get an ultrasound,” she remembered after arriving at the emergency room. The first ultrasound showed a faint heartbeat, but within a few minutes, it had stopped. Smith was prepped for labor and delivery, but it was too late. The baby she had named Lauren Kelly didn’t survive.

More than half of all 516 fetal deaths reported that year in South Carolina were linked to Black mothers.

The loss of her daughter devastated Smith. She has since given birth to three boys and channeled the pain of her first pregnancy into the development of a patient navigation app called “Lauren,” funded by the South Carolina Research Authority, which she hopes will be used to spare other women from a similar loss.

The app is designed to allow pregnant and postpartum women to track their stress levels and vital signs, including their blood pressure, and to automatically relay those readings to their physicians. While not a diagnostic tool, Smith intends for the app to empower patients with real-time information so they can identify potential problems early and use it to advocate for themselves.

“You have to use your voice. You have to speak up,” said Smith, who wants the Lauren app to be made available free to pregnant women enrolled in Medicaid. “I’m still finding that people are not using their voice when they go into the doctor’s.”

O’laysha Davis holds up her infant daughter. The photograph is framed so that you see O'Layasha smiling at her child, while the baby's back is to the camera.
Davis avoided an induction. She felt the first pains of labor at home and then delivered Journee at the Medical University of South Carolina on Aug. 31.(Gavin McIntyre for KFF Health News)

New Research

Across the South, researchers are trying to identify solutions to improve health outcomes for mothers and babies. “Nothing seems to be moving the needle,” said Joseph Biggio, a maternal-fetal specialist at Ochsner Health in New Orleans.

The National Institutes of Health recently awarded Ochsner Health and its partners a $16.5 million grant to establish the Southern Center for Maternal Health Equity to address Louisiana’s high maternal mortality rate. Part of that research will involve finding ways to deliver care in rural parts of the state where hospitals have closed, high-risk specialists don’t exist, and pregnant women are disproportionately Black.

Biggio said the new research center will also compare birth outcomes in Louisiana to those in neighboring Mississippi, where infant and maternal mortality rates are the highest in the country, according to the Centers for Disease Control and Prevention.

A key difference between these two Deep South states: Lawmakers in Louisiana have expanded access to the Medicaid program under the Affordable Care Act, while lawmakers in Mississippi haven’t.

Women in most states who qualify for Medicaid during pregnancy are also covered for 12 months after they give birth. But every year, many childless women in Southern states are not eligible for the low-income health insurance program until they become pregnant. Medicaid expansion, as it was designed under the Affordable Care Act, would fill this gap by loosening eligibility restrictions, but most states in the South haven’t adopted the expansion.

Some health care policy experts believe that covering women before they become pregnant and between pregnancies would reduce the burden of obesity, diabetes, and hypertension, and the risks those conditions pose to women and infants.

Tracking long-term improvement is crucial because success won’t be achieved overnight, said John Simpkins, president of the North Carolina-based MDC, a nonprofit focused on improving racial equity and economic mobility in the South.

“If we’re talking about population health improvements, then really the intervention should be beginning with kids who are being born right now, and following them through adulthood, and then probably their kids,” Simpkins said. Medicaid expansion, for example, could raise families out of poverty, but those benefits might not be realized for another generation, he said.

“I’ve found that the things that work the most are sustained investment over time,” he said.

But this work isn’t relegated to the South. In the majority-Black city of Flint, Michigan, for example, researchers are poised to launch in 2024 a multiyear project called Rx Kids to determine if direct, unrestricted cash payments to pregnant women and new moms improve birth outcomes.

“This is standard in other countries. This is common, basic sense,” said Mona Hanna-Attisha, a pediatrician and the associate dean of public health at the Michigan State University College of Human Medicine, who is leading the Flint research.

Poverty tends to peak just before a woman gives birth, she said, and the project in Flint will attempt to offset that hardship by offering every woman in the city who becomes pregnant, regardless of race, a payment of $1,500 at the halfway point of her pregnancy and then an additional $500 a month during the first year of her infant’s life, for a total of $7,500.

“This is designed to address this critical window, both economically and neurodevelopmentally,” Hanna-Attisha said. “It’s fundamentally how we are supposed to take care of each other. And it is not revolutionary.”

O’laysha Davis, standing in front of a window, holds her infant daughter in a gentle embrace.
“I labored at home,” Davis says, “which is what I wanted to do to begin with.”(Gavin McIntyre for KFF Health News)

‘Extra Bad for Black Women’

Back in Charleston, the first seeds of concern had been planted during the first half of O’laysha Davis’ pregnancy when, she said, an OB-GYN prescribed a drug to control high blood pressure. She’d declined to take it — against her doctor’s guidance — because her blood pressure is normally “up and down,” she said. It wasn’t unusual for her reading to be high at the doctor’s office and normal at home, a common phenomenon known as “white coat hypertension.”

But high blood pressure during pregnancy, if left untreated, can be fatal for moms and babies. Along with medication, Davis’ doctor recommended delivering the infant a few weeks before her due date to avoid complications.

It wasn’t necessarily bad medical advice, but Davis feared the risks associated with inducing labor early, knowing that babies born after 39 weeks of gestation are generally healthier.

“I’m not getting an induction. Don’t schedule me,” she told the doctor.

Her OB-GYN scheduled one anyway. But on the morning of the scheduled induction, Davis received mixed messages from the hospital. First, there wasn’t a hospital bed available, so they told her not to come in. Later that day, though, in phone calls to Davis and her emergency contact, they advised that she come in immediately.

Finally, Davis said, she lost trust in her medical team. Compelled to find someone who would listen, she Googled the names of midwives in Charleston.

Davis reached midwife Nicole Lavallee by phone.

“I have the same conversation multiple times a week,” Lavallee said, with women who feel their medical team has stopped listening to them. “It’s extra bad for Black women.”

Lavallee connected Davis with a doula, then helped her make an appointment at another birthing hospital in Charleston.

Davis avoided an induction. She felt the first pains of labor at home and then delivered her baby — a girl named Journee Divine — on Aug. 31, a few days shy of her due date, at the Medical University of South Carolina.

“I labored at home, which is what I wanted to do to begin with,” she said. “I’m going to do it my way.”

KFF Health News’ ‘What the Health?’: Democrats See Opportunity in GOP Threats to Repeal Health Law 

The Host

With other GOP presidential candidates following Donald Trump’s lead in calling for an end to the Affordable Care Act, Democrats are jumping on an issue they think will favor them in the 2024 elections. The Biden administration almost immediately rolled out a controversial proposal that could dramatically decrease the price of drugs developed with federally funded research dollars. The drug industry and the business community at large are vehemently opposed to the proposal, but it is likely to be popular with voters.

Meanwhile, the Supreme Court hears arguments in a case to decide whether the Sackler family should be able to shield billions of dollars taken from its bankrupt drug company, Purdue Pharma, from further lawsuits regarding the company’s highly addictive drug OxyContin.

This week’s panelists are Julie Rovner of KFF Health News, Anna Edney of Bloomberg News, Alice Miranda Ollstein of Politico, and Rachana Pradhan of KFF Health News.

Among the takeaways from this week’s episode:

  • The ACA may end up back on the proverbial chopping block if Trump is reelected. But as many in both parties know, it is unlikely to be a winning political strategy for Republicans. ACA enrollment numbers are high, as is the law’s popularity, and years after a failed effort during Trump’s presidency, Republicans still have not unified around a proposal to replace it.
  • Democrats are eager to capitalize on the revival of “repeal and replace.” This week, the Biden administration announced plans to exercise so-called “march-in rights,” which it argues allow the government to seize certain patent-protected drugs whose prices have gotten too high and open them to price competition. The plan, once largely embraced by progressives, could give President Joe Biden another opportunity to claim his administration has proven more effective than Trump’s heading into the 2024 election.
  • The Senate voted to approve more than 400 military promotions this week, effectively ending the 10-month blockade by Republican Sen. Tommy Tuberville of Alabama over a Pentagon policy that helps service members travel to obtain abortions. At the state level, the Texas courts are considering cases over its exceptions to the state’s abortion ban, while in Ohio, a woman who miscarried after being sent home from the hospital is facing criminal charges.
  • Meanwhile, the Supreme Court soon could rule on whether EMTALA, or the Emergency Medical Treatment and Labor Act, requires doctors to perform abortions in emergencies. And justices are also considering whether to allow a settlement deal to move forward that does not hold the Sacker family accountable for the harm caused by opioids.
  • “This Week in Medical Misinformation” highlights a lawsuit filed by Texas Attorney General Ken Paxton accusing Pfizer of failing to end the covid-19 pandemic with its vaccine.

Also this week, Rovner interviews Dan Weissmann, host of KFF Health News’ sister podcast, “An Arm and a Leg,” about his investigation into hospitals suing their patients for unpaid medical bills.

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

Julie Rovner: The Wisconsin State Journal’s “Dane, Milwaukee Counties Stop Making Unwed Fathers Pay for Medicaid Birth Costs,” by David Wahlberg.  

Anna Edney: Bloomberg News’ “Tallying the Best Stats on US Gun Violence Is Trauma of Its Own,” by Madison Muller.  

Alice Miranda Ollstein: Stat’s “New Abortion Restrictions Pose a Serious Threat to Fetal Surgery,” by Francois I. Luks, Tippi Mackenzie, and Thomas F. Tracy Jr. 

Rachana Pradhan: KFF Health News’ “Patients Expected Profemur Artificial Hips to Last. Then They Snapped in Half,” by Brett Kelman and Anna Werner, CBS News.

Also mentioned in this week’s episode:

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on SpotifyApple PodcastsPocket Casts, or wherever you listen to podcasts.

Colorado culpa a Biden y a farmacéuticas por retrasar importaciones de medicamentos de Canadá

Las autoridades de Colorado aseguran que su plan de importar medicamentos más baratos de Canadá se ha visto obstaculizado por la oposición de las farmacéuticas y la falta de acción por parte de la administración Biden, según un informe estatal obtenido por KFF Health News.

El informe del 1 de diciembre, preparado para la legislatura estatal por el Departamento de Política y Financiamiento de Atención Médica del estado, indica que los funcionarios estatales se acercaron a 23 fabricantes de medicamentos en el último año para proponer un programa de importación. Solo cuatro accedieron a discutir la propuesta, y ninguno mostró interés en participar.

“En general, los desafíos que persisten están fuera de la autoridad estatal y dependen de la acción de la FDA y/o de los fabricantes de medicamentos”, dice el informe.

Legisladores de ambos partidos, a nivel estatal y nacional, han buscado durante décadas legalizar la importación de medicamentos desde Canadá.

Desde 2020, cuando la administración del presidente Donald Trump abrió la puerta a la importación de medicamentos canadienses con regulaciones emitidas pocas semanas antes de perder la reelección, solo algunos estados han presentado solicitudes a la Administración de Alimentos y Medicamentos (FDA) para crear programas de importación.

La FDA aún no ha tomado decisiones al respecto. Colorado presentó su solicitud en diciembre de 2022. Florida, que presentó la solicitud en 2020, ha estado esperando casi tres años por una decisión de la administración Biden sobre su plan de importación, impulsado por el gobernador Ron DeSantis, ahora candidato presidencial republicano.

Cherie Duvall-Jones, vocera de la FDA, dijo que la entidad federal no ha actuado sobre las solicitudes de importación de los estados porque no ha determinado si ahorrarían dinero significativo para los consumidores sin plantear riesgos para la salud pública.

Los consumidores estadounidenses pagan algunos de los precios más altos del mundo por medicamentos de marca. Los medicamentos suelen ser más baratos en Canadá, donde el gobierno controla los precios.

Bajo el gobierno de Trump, el gobierno federal declaró que la importación de medicamentos desde Canadá se podía hacer de manera segura, cumpliendo por primera vez con una condición establecida en una ley de 2003.

Pero los funcionarios de Colorado mencionaron otro inconveniente: la regla no tuvo en cuenta que los estados tendrían que negociar directamente con las farmacéuticas, que se oponen a vender sus medicamentos de marca en Estados Unidos a precios canadienses.

“Como la Regla Final federal no contempló la necesidad de este paso de negociación, hemos instado a la FDA a emitir más guías sobre cómo los estados pueden poner en práctica el programa teniendo esto en cuenta, pero hasta la fecha, no se ha emitido ninguna orientación”, dice el informe de Colorado.

A diferencia de lo que hizo con muchas otras políticas de salud de la administración Trump, Biden no ha revocado ni revisado la regla de importación. Pero su administración tampoco ha mostrado mucho apoyo a la idea. El secretario del Departamento de Salud y Servicios Humanos (HHS), Xavier Becerra, dijo a KFF Health News en diciembre pasado que no se comprometería a que la FDA resolviera alguna solicitud estatal en 2023.

El presidente ha sugerido repetidamente que durante su mandato los estadounidenses podrían importar medicamentos de Canadá. Durante su campaña de 2020, Biden dijo que permitiría la importación de medicamentos certificados como seguros por el gobierno. En 2021, ordenó a la FDA trabajar con los estados para importar medicamentos recetados desde Canadá. En un discurso de 2022 sobre cómo planeaba reducir los precios de los medicamentos, citó estimaciones de Colorado sobre cuánto podrían ahorrar las personas en el estado a través de la importación.

Los funcionarios de la FDA respondieron a la solicitud de Colorado en marzo pidiendo más información y una lista más pequeña de medicamentos a los que apuntar, para demostrar que la importación podría ahorrar dinero. La solicitud inicial de Colorado enumeraba 112 medicamentos de alto costo. El estado estima que los residentes y empleadores podrían ahorrar un promedio de 65% en los costos de esos medicamentos, incluidos fármacos para la diabetes, el asma y el cáncer.

Colorado dijo que planea presentar una solicitud actualizada a principios del próximo año. Para entonces, es posible que la FDA haya tomado una decisión sobre la solicitud de Florida.

Las propuestas de importación de Colorado y Florida son diferentes. El programa de Colorado tiene como objetivo ayudar directamente a los consumidores a obtener medicamentos más baratos. El plan de Florida busca reducir el gasto en medicamentos en programas gubernamentales como Medicaid, el sistema penitenciario y las instalaciones dirigidas por el Departamento de Niños y Familias del estado.

La industria farmacéutica ha argumentado que la administración Trump no certificó adecuadamente que los medicamentos importados de Canadá serían seguros, poniendo en peligro la salud de los estadounidenses. El gobierno de Canadá también ha expresado preocupación de que las importaciones de Estados Unidos generen escasez y precios más altos en su país.

“Los fabricantes de medicamentos harán cualquier cosa para proteger a su gallina de los huevos de oro que son los consumidores y pacientes estadounidenses que pagan los precios más altos por medicamentos en el mundo”, dijo la senadora estatal de Colorado, Sonya Jaquez Lewis, demócrata, farmacéutica y defensora líder de la importación de medicamentos.

Jaquez Lewis dijo que la Casa Blanca y el Congreso deberían obligar a los fabricantes de medicamentos a negociar con los estados para iniciar programas de importación.

En su respuesta inicial a la solicitud de Colorado, la FDA enumeró varios tipos de información que aún necesitaba, incluidos planes sobre etiquetado y elegibilidad de medicamentos, según una carta de marzo de la FDA al estado. Otro problema, dijo la FDA: el estado planeaba importar medicamentos a través de la frontera en Buffalo, Nueva York. La FDA dijo que el único puerto de entrada permitido para medicamentos está en Detroit.

Los funcionarios de Colorado le dijeron a la FDA en marzo que, sin la aprobación federal de su solicitud, estaban teniendo dificultades para obtener compromisos de los fabricantes de medicamentos para obtenerlos.

“Se ha dejado claro que los posibles socios estarán más interesados en comprometerse una vez que nuestro programa haya sido aprobado por la FDA”, escribió Kim Bimestefer, directora ejecutiva del Departamento de Política y Financiamiento de la Atención Médica de Colorado, a la FDA.

“Aunque entendemos que el marco regulatorio no permite una aprobación provisional, sabemos que mostrar progreso hacia un programa aprobado ayudará en nuestras negociaciones con los fabricantes de medicamentos”, agregó.

Otro inconveniente es que la regla de la FDA no permite a los estados comprar medicamentos directamente a distribuidores secundarios. En cambio, deben comprarlos directamente a los fabricantes, dijo Marc Williams, vocero de la agencia de Colorado.

Esto ha resultado difícil porque los fabricantes de medicamentos han prohibido la exportación de productos destinados a la venta en Canadá a los Estados Unidos, dijo Williams.

“Sin su permiso y un acuerdo de suministro directo con un fabricante, Colorado no puede comprar e importar estos medicamentos a precios más bajos que ahorrarían dinero a las personas”, dijo.

Programas ponen los medicamentos sin usar en manos de pacientes que los necesitan

En una reciente tarde de noviembre, Angie Phoenix esperaba, en una farmacia de la segunda ciudad más grande de Colorado, para recoger los medicamentos con los que trata su hipertensión y las convulsiones que sufre en uno de sus brazos.

Pero esta compra era diferente de las que ocurren cada día en miles de farmacias de todo Estados Unidos. A Phoenix, de 50 años, que vive en la cercana comunidad de Falcon y no tiene seguro médico, estos medicamentos no le costaron nada.

Open Bible Medical Clinic and Pharmacy gestiona el único programa de donación de medicamentos de Colorado. La mayoría de los fármacos proceden de residencias de adultos mayores en el estado.

“Los aceptamos todos”, explicó la farmacéutica fundadora, Frieda Martin, que el año pasado utilizó esas donaciones para dispensar 1,900 recetas a 200 adultos con bajos ingresos y sin seguro médico. Los participantes pagan una cuota de inscripción anual de $15 para obtener medicamentos gratuitos y atención en la clínica.

Los programas de donación de medicamentos, como éste de Colorado y otro de California, recogen de centros de salud, residentes, farmacias o prisiones los medicamentos sin abrir y sin caducar que se acumulan cuando los pacientes son dados de alta, cambian de medicina o mueren, y los redistribuyen a pacientes vulnerables.

Un 8% de los adultos de Estados Unidos que tomaron medicamentos recetados en 2021, unas 9 millones de personas, no los tomaron según indica la receta debido al costo, y aquellos sin seguro fueron más propensos a saltarse la medicación que los que tenían seguro, según la Encuesta Nacional de Entrevistas de Salud.

Los programas varían en tamaño, pero a menudo están a cargo de farmacias de caridad, organizaciones sin fines de lucro o gobiernos, y mantienen los medicamentos fuera de los vertederos o incineradores, donde se estima que se desechan $11 mil millones en medicamentos no utilizados cada año.

Cuarenta y cuatro estados cuentan ya con leyes que permiten la donación de medicamentos, según la Conferencia Nacional de Legislaturas Estatales. Muchos programas, como el de Colorado, son pequeños o están subutilizados. Ahora, Colorado y otros estados pretenden ampliar su enfoque.

Pharmacist Frieda Martin holds a donated medication blister pack at Open Bible Clinic and Pharmacy in Colorado Springs, Colorado, on Nov. 7, 2023.
La farmacéutica fundadora Frieda Martin utilizó medicamentos donados para surtir 1,900 recetas a 200 adultos de bajos ingresos y sin seguro el año pasado en Open Bible Medical Clinic and Pharmacy. (Kate Ruder for KFF Health News)
Pharmacist Frieda Martin poses at Open Bible Clinic and Pharmacy in Colorado Springs, Colorado, on Nov. 7, 2023. A large cross is on the wall behind her, along with signs and other information about the clinic.
“Los aceptamos todos”, dijo Martin sobre los medicamentos distribuidos a través del único programa de donación de medicamentos de Colorado. (Kate Ruder for KFF Health News)

“Los programas de donación de fármacos son eficaces. Existe una gran necesidad. Y hay oportunidades para que los estados ayuden a sus residentes promulgando nuevas leyes”, dijo George Wang, cofundador de SIRUM, siglas de Supporting Initiatives to Redistribute Unused Medicine, una organización sin fines de lucro que cuenta con la mayor red de donantes y distribuidores de medicamentos en el país.

El líder de la mayoría del Senado de Colorado, el demócrata Robert Rodríguez, dijo que planea presentar un proyecto de ley el próximo año para crear un programa de donación de medicamentos que ayude al 10% de los residentes del estado que no pueden comprar sus recetas debido al costo.

Del mismo modo, una ley del año pasado en California permite ampliar el primer y único programa de donación de medicamentos del estado, Better Health Pharmacy en el condado de Santa Clara, a los condados de San Mateo y San Francisco. Kathy Le, farmacéutica supervisora de Better Health, señaló que se está “en las primeras fases” de colaboración con otras farmacias en condados de California para desarrollar programas similares.

El Programa de Donación de Medicamentos de Wyoming, con sede en Cheyenne, utiliza la distribución por correo para llegar a los residentes, incluidos los de zonas remotas del estado que pueden no tener farmacias locales, dijo Sarah Gilliard, farmacéutica y directora del programa. Esta iniciativa envía por correo un total aproximado de 16,000 recetas gratuitas al año a 2,000 residentes de Wyoming con bajos ingresos, sin seguro o con seguro insuficiente.

“El acceso es sin duda un factor importante a la hora de diseñar nuestro programa”, afirmó.

Muchos de los participantes en el programa de Wyoming son mayores de 65 años, beneficiarios de Medicare, con ingresos fijos y copagos inasequibles, pero Gilliard apuntó que ha habido un aumento reciente de participantes de entre 20 y 40 años. Wyoming es uno de los 10 estados que no han ampliado Medicaid para dar cobertura a más residentes con bajos ingresos, lo que podría ser un factor en ese aumento, según Gilliard.

Thank-you notes are pinned to the wall at the Wyoming Medication Donation Program in Cheyenne, Wyoming. The note at in the center of the board reads, "Thank you so much for all your help with medication thru out the years. You have been a huge blessing in my life."
Notas de agradecimiento sobre la pared del Programa de Donación de Medicamentos de Wyoming en Cheyenne, Wyoming.(Wyoming Medication Donation Program)

Las donaciones proceden de los 50 estados, y la mayoría son de personas que descubren el programa en Internet o a través del boca en boca. A veces, los donantes introducen en los paquetes notas manuscritas sobre el elevado costo de la medicación o el recuerdo de un familiar fallecido.

Gilliard las guarda y las pega a la pared de la farmacia.

El programa de Wyoming, con su farmacia central gestionada por el estado que recibe, procesa y envía por correo las recetas a los residentes, podría ser un modelo para Colorado, según Gina Moore, farmacéutica y decana de la Facultad de Farmacia y Ciencias Farmacéuticas Skaggs de la Universidad de Colorado en Aurora. Moore fue coautora del informe de un grupo de trabajo para el gobierno estatal, el pasado diciembre, sobre la viabilidad de un programa de donación de medicamentos.

El informe señalaba el éxito de los programas con financiación externa que, en el caso de Wyoming, procede directamente del dinero de los contribuyentes. Utilizando el presupuesto de Wyoming, preveía que un programa de donación de medicamentos en Colorado costaría unos $431,000 el primer año, con un farmacéutico y un técnico farmacéutico que atenderían a unos 1,500 pacientes.

En Colorado Springs, Martin y su marido, Jeff Martin, director ejecutivo de la Open Bible Medical Clinic and Pharmacy, creen que un modelo como el suyo, de carácter benéfico y gestionado por voluntarios, sería viable en Colorado, y se preguntan cómo encajaría su farmacia, de larga trayectoria, con los posibles esfuerzos estatales. En el informe del grupo de trabajo, Moore y sus colegas escriben que el modelo estatal y el programa de los Martin podrían coexistir.

Desde que Colorado promulgó una ley para permitir la donación de fármacos en 2005, se ha modificado varias veces en un intento de ayudar a su crecimiento. Pero el estado no ha invertido dinero ni infraestructura para que despegue un programa de donación de medicamentos.

El Programa de Donación de Medicamentos de Wyoming envía anualmente un total aproximado de 16,000 recetas gratuitas a 2,000 residentes de Wyoming con bajos ingresos, sin seguro o con seguro insuficiente. (Wyoming Medication Donation Program)
The Wyoming Medication Donation Program’s pharmacy is shown in this undated photo in Cheyenne, Wyoming. It is a large room containing rows of shelves that contain medication.
“El acceso es sin duda un factor importante a la hora de diseñar nuestro programa”, afirmó Sarah Gilliard, farmacéutica que gestiona el programa de Wyoming. (Wyoming Medication Donation Program)

Las donaciones de fármacos enviadas por correo a Open Bible disminuyeron durante la pandemia y sólo ahora se están recuperando lentamente. La farmacia envía aproximadamente la mitad de todos los medicamentos donados a clínicas de Colorado que atienden a pacientes sin seguro y con bajos ingresos en otras ciudades como Denver, Loveland y Longmont.

En otros lugares de Estados Unidos, SIRUM se asegura de que los donantes dispongan de envases para enviar los medicamentos donados, y proporciona programas informáticos para facilitar el inventario y la distribución. Recientemente, creó un inventario en línea de medicamentos para Good Pill, una farmacia sin fines de lucro que envía recetas para 90 días por unos $6 a residentes de Illinois y Georgia.

SIRUM ayuda a facilitar las donaciones para Better Health Pharmacy de California, que ha dispensado medicamentos a 15,000 residentes del condado de Santa Clara desde su apertura en 2015, dijo Le. Muchos no tienen seguro, tienen un seguro insuficiente y hablan español o vietnamita. Diez voluntarios, a menudo estudiantes, ayudan a registrar las donaciones, y Better Health Pharmacy surte aproximadamente 40,000 recetas al año con costos operativos anuales de poco más de $1 millón, según Le y los funcionarios de salud pública del condado de Santa Clara.

Además de recetas, Better Health Pharmacy ofrece pruebas gratuitas de covid y vacunas contra la gripe para atender las necesidades de su comunidad. “Intentamos encontrar soluciones creativas para ampliar el alcance de nuestros servicios”, añadió Le.

Este compromiso de subsanar las deficiencias en el acceso a la salud y reducir el impacto sobre el medio ambiente significa que “es el momento oportuno” para ampliar los programas de donación de medicamentos en California y fuera, afirmó Monika Roy, subdirectora de salud y controladora de enfermedades transmisibles del Departamento de Salud Pública del condado de Santa Clara.

“Durante la pandemia, las desigualdades en el acceso a la salud se magnificaron”, señaló Roy. “Cuando tenemos soluciones como estas, es un paso adelante para abordar tanto la equidad como el cambio climático en el mismo modelo”.

Encuesta revela que persiste la discriminación racial en la atención médica

Muchas personas de grupos raciales y étnicos minoritarios dicen que se preparan mentalmente para recibir insultos y ser prejuzgados antes de las citas médicas, según una nueva encuesta entre pacientes que reafirma la prevalencia de la discriminación racial en el sistema de salud de Estados Unidos.

La encuesta de KFF, que se realizó con casi 6,300 pacientes que han estado recibiendo atención en los últimos tres años, encontró que alrededor del 55% de los adultos de raza negra sienten que deben tener mucho cuidado con su apariencia para ser tratados de manera justa por los médicos y otros proveedores de atención de salud.

Casi la mitad de los pacientes hispanos, los Indio americanos y los nativos de Alaska sienten lo mismo, al igual que aproximadamente 4 de cada 10 pacientes asiáticos.

En comparación, el 29% de los blancos no hispanos encuestados dijeron que se preocupaban por su apariencia antes de las citas.

“En 2023, la noción de que cualquier persona debe prepararse para sufrir discriminación es triste por un lado y enojoso por el otro”, dijo Burgess Harrison, director ejecutivo de la National Minority Health Association, en un correo electrónico . “El estrés que causa, además de cualquier problema de salud involucrado… es una locura”.

La discriminación ha sido durante mucho tiempo una preocupación tanto para los pacientes como para los proveedores de atención médica, en un país en donde las disparidades raciales en los resultados de salud son enormes y particularmente desfavorables para las personas negras.

Un hombre hispano de 30 años de Illinois, que respondió a la encuesta de KFF, dijo a los investigadores que cuando va a sus citas médicas usa ropa con el logo de la universidad en donde trabaja. Se dio cuenta que cuando los proveedores se enteran que es profesor, lo escuchan más atentamente y lo involucran más en las decisiones médicas, dijo.

Una mujer asiática de 44 años de California dijo que sus médicos varones, blancos no hispanos, ignoraron sus preocupaciones sobre sus problemas respiratorios y le dijeron que “probablemente estaba pensando demasiado en respirar”. Más tarde le diagnosticaron asma.

Los dos encuestados no fueron identificados con nombre y apellido en el estudio.

La encuesta ofrece “una manera de cuantificar realmente cuáles son esas experiencias con el racismo y la discriminación, y las múltiples formas en las que luego impactan en la vida de las personas”, dijo Samantha Artiga, directora del programa de políticas de salud y equidad racial de KFF.

“Para las personas que han estado siguiendo estos temas durante mucho tiempo, los hallazgos no son inesperados”, agregó. Otros hallazgos del sondeo fueron:

  • Un tercio de los adultos informaron al menos una de varias experiencias negativas con un proveedor de atención médica en los últimos tres años, como que un profesional asumiera algo sobre ellos sin preguntar, o sugiriera que ellos eran los responsables de su problema de salud.
  • Casi una cuarta parte de los adultos negros, el 19% de los adultos nativos de Alaska y nativos americanos, el 15% de los adultos hispanos y el 11% de los adultos asiáticos dijeron que creían que habían sufrido un trato negativo debido a su raza u origen étnico.
  • El 22% de las embarazadas o que dieron a luz en los últimos 10 años, de raza negra, dijeron que les negaron los analgésicos que pensaban necesitaban. Sólo el 10% de los adultos blancos no hispanos en circunstancias similares informaron la misma queja.

Cuando las personas no se sienten respetadas o bienvenidas por sus proveedores de salud, es posible que eso los desanime a buscar ayuda médica o que cambien de proveedor con más frecuencia, dijo Artiga. Los pacientes de poblaciones minoritarias “experimentan peor salud como resultado de un trato injusto en el sistema de atención médica”, agregó.

La encuesta también encontró que la discriminación fuera del sistema de atención médica tenía consecuencias para la salud. Las personas que dijeron haber experimentado discriminación en su vida cotidiana informaron dos veces más seguido que a menudo se sentían ansiosas, solas o deprimidas en comparación con aquellas que rara vez o nunca habían enfrentado discriminación.

La encuesta encontró que las personas negras que reportaron tonos de piel más oscuros tenían más probabilidades de haber sufrido discriminación que aquellos con piel más clara. También reveló “cómo persisten y prevalecen las experiencias de racismo y discriminación hoy en día, en la vida diaria y también en la atención médica, a pesar del aumento de las alertas y el abordaje sobre el racismo”, dijo Liz Hamel, directora de investigación de encuestas y opinión pública de KFF.

La diversidad entre los proveedores de atención médica es importante, según la encuesta. La mayoría de las personas de minorías que participaron en la encuesta dijeron que menos de la mitad de sus visitas médicas en los últimos tres años fueron con un proveedor de su misma raza u origen étnico. Los que sí vieron a un médico de su misma raza o etnia tuvieron más probabilidades de informar mejores experiencias, como que su médico les explicara las cosas “de una manera que pudieran entender” o les preguntara sobre otros factores de salud como su empleo, vivienda y acceso a alimentos y transporte.

El 40% de los adultos negros que vieron a proveedores de su mi raza reportaron haber discutido temas sociales y económicos, mientras que solo el 24% dijo haber charlado sobre estos temas con proveedores de otras razas.

​Harrison, de la National Minority Health Association, escribió que “es vital un énfasis renovado en reclutar más personas de color en el campo de la atención médica”.

Agregó que la encuesta “ilustra dolorosamente que el prejuicio racial en la atención sanitaria es tan dañino como cualquier enfermedad”.

La “Encuesta sobre racismo, discriminación y salud” de KFF se realizó del 6 de junio al 14 de agosto en línea y por teléfono entre una muestra representativa a nivel nacional de adultos estadounidenses en inglés, español, chino, coreano y vietnamita.

Dodging the Medicare Enrollment Deadline Can Be Costly

Angela M. Du Bois, a retired software tester in Durham, North Carolina, wasn’t looking to replace her UnitedHealthcare Medicare Advantage plan. She wasn’t concerned as the Dec. 7 deadline approached for choosing another of the privately run health insurance alternatives to original Medicare.

But then something caught her attention: When she went to her doctor last month, she learned that the doctor and the hospital where she works will not accept her insurance next year.

Faced with either finding a new doctor or finding a new plan, Du Bois said the decision was easy. “I’m sticking with her because she knows everything about me,” she said of her doctor, whom she’s been seeing for more than a decade.

Du Bois isn’t the only one tuning out when commercials about the open enrollment deadline flood the airwaves each year — even though there could be good reasons to shop around. But sifting through the offerings has become such an ordeal that few people want to repeat it. Avoidance is so rampant that only 10% of beneficiaries switched Medicare Advantage plans in 2019.

Once open enrollment ends, there are limited options for a do-over. People in Medicare Advantage plans can go to another Advantage plan or back to the original, government-run Medicare from January through March. And the Centers for Medicare & Medicaid Services has expanded the criteria for granting a “special enrollment period” to make changes in drug or Advantage plans anytime.

But most seniors will generally allow their existing policy to renew automatically, like it or not.

Keeping her doctor was not Du Bois’ only reason for switching plans, though. With help from Senior PharmAssist, a Durham nonprofit that advises seniors about Medicare, she found a Humana Medicare Advantage plan that would not only be accepted by her providers but also cover her medications — saving her more than $14,000 a year, said Gina Upchurch, the group’s executive director.

Senior PharmAssist is one of the federally funded State Health Insurance Assistance Programs, known as SHIPs, available across the country to provide unbiased assistance during the open enrollment season and year-round to help beneficiaries appeal coverage denials and iron out other problems.

“Many people are simply overwhelmed by the calls, ads, the sheer number of choices, and this ‘choice overload’ contributes to decision-making paralysis,” said Upchurch. Seniors in Durham have as many as 74 Advantage plans and 20 drug-only plans to choose from, she said.

Upchurch said the big insurance companies like the way the system works now, with few customers inclined to explore other plans. “They call it ‘stickiness,’” she said. “If we had fewer and clear choices — an apple, orange, grape, or banana — most people would review options.”

In Washington state, one woman switched from a plan she had had for more than a decade to one that will cover all her drugs and next year will save an estimated $7,240, according to Tim Smolen, director of the state’s SHIP, Statewide Health Insurance Benefits Advisors.

In Northern California, another woman changed drug plans for the first time since 2012, and her current premium of $86 will plummet to 40 cents a month next year, an annual savings of about $1,000, said Pam Smith, a local director for California’s SHIP, called the Health Insurance Counseling & Advocacy Program.

And in Ohio, a woman sought help after learning that her monthly copayment for the blood thinner Eliquis would rise from $102 to $2,173 next year. A counselor with Ohio’s SHIP found another plan that will cover all her medications for the year and cost her just $1,760. If she stuck with her current plan, she would be paying an additional $24,852 for all her drugs next year, said Chris Reeg, who directs that state’s program.

In some cases, CMS tries to persuade beneficiaries to switch. Since 2012, it has sent letters every year to thousands of beneficiaries in poorly performing Advantage and drug plans, encouraging them to consider other options. These are plans that have received less than three out of five stars for three years from CMS.

“You may want to compare your plan to other plans available in your area and decide if it’s still right for you,” the letter says.

CMS allows low-scoring plans to continue to operate. In an unusual move, officials recently found that one plan had such a terrible track record that they will terminate its contract with government health programs next December.

CMS also contacts people about changing plans during open enrollment if they get a subsidy — called “extra help” — that pays for their drug plan’s monthly premium and some out-of-pocket expenses. Because some premiums will be more expensive next year, CMS is warning beneficiaries that they could be in for a surprise: a monthly bill to cover cost increases the subsidy doesn’t cover.

But many beneficiaries receive no such nudge from the government to find out if there is a better, less expensive plan that meets their needs and includes their health care providers or drugs.

That leaves many people with Medicare drug or Advantage plans on their own to decipher any changes to their plans while there is still time to enroll in another. Insurers are required to alert members with an “annual notice of change,” a booklet often more than two dozen pages long. Unless they plow through it, they may discover in January that their premiums have increased, the provider network has changed, or some drugs are no longer covered. If a drug plan isn’t offered the next year and the beneficiary doesn’t pick a new one, the insurer will select a plan of its choosing, without considering costs or needed drug coverage.

“Every year, our call volume skyrockets in January when folks get invoices for that new premium,” said Reeg, the Ohio program director. At that point, Medicare Advantage members have until March 30 to switch to another plan or enroll in government-run Medicare. There’s no similar grace period for people with stand-alone drug plans. “They are locked into that plan for the calendar year.”

One cost-saving option is the government’s Medicare Savings Program, which helps low-income beneficiaries pay their monthly premium for Medicare Part B, which covers doctor visits and other outpatient services. The Biden administration’s changes in eligibility for subsidies announced in September will extend financial assistance to an estimated 860,000 people — if they apply. In the past, only about half of those eligible applied.

Fixing a mistake after the open enrollment period ends Dec. 7 is easy for some people. Individuals who receive “extra help” to pay for drug plan premiums and those who have a subsidy to pay for Medicare’s Part B can change drug plans every three months.

At any time, beneficiaries can switch to a Medicare Advantage plan that earns the top five-star rating from CMS, if one is available. “We’ve been able to use those five-star plans as a safety net,” said Reeg, the Ohio SHIP director.

Other beneficiaries may be able to get a “special enrollment period” to switch plans after the open enrollment ends if they meet certain conditions. Local SHIP offices can help people make any of these changes when possible.

Reeg spends a lot of time trying to ensure that unwelcome surprises — like a drug that isn’t covered — don’t happen in the first place. “What we want to do is proactively educate Medicare patients so they know that they can go to the doctors and hospitals they want to go to in the upcoming year,” she said.

Candidates Clashed But Avoided Talk of Abortion at 4th GOP Primary Debate

Raised voices and sharp words marked Wednesday night’s fourth Republican presidential primary debate as four candidates argued about everything from their own electability to the continued front-runner status of former President Donald Trump. Abortion was never mentioned.

Florida Gov. Ron DeSantis, former South Carolina Gov. Nikki Haley, entrepreneur Vivek Ramaswamy, and former New Jersey Gov. Chris Christie faced off in Tuscaloosa, Alabama, just 40 days before the Iowa caucuses. They sparred over antisemitism and the war between Israel and Hamas as well as the conflict in Ukraine. There were references to cryptocurrency and TikTok. Candidates also attempted to tackle inflation, corruption, border issues, and the inner workings of the Department of Justice, among other things.

As he did in the previous three meetings, Trump opted not to participate, this time attending a fundraiser in Florida. The event was moderated by NewsNation’s Elizabeth Vargas; Megyn Kelly, host of “The Megyn Kelly Show” on SiriusXM; and Eliana Johnson, editor-in-chief of The Washington Free Beacon.

Our PolitiFact partners fact-checked the candidates in real time. You can read the full coverage here.

Health care — in the form of the Affordable Care Act — took center stage during the debate’s last minutes. Until recently, it seemed that the Republican Party had all but abandoned its years-long effort to repeal and replace Obamacare. But Trump resurrected the campaign with a social media post over Thanksgiving weekend describing the GOP’s failure to achieve this goal during his first term as “a low point for the Republican Party.”

DeSantis, who seemed to pick up on some of Trump’s ACA criticisms, has since promised that he will have a health plan that is “different and better.” He was challenged by debate moderators with the question: “Why should Americans trust you more than any other Republicans who have disappointed them on this issue?” In his response, he offered key buzzwords but few specifics. “You need price transparency. You need to hold the pharmaceuticals accountable. You need to hold big insurance and big government accountable, and we’re gonna get that done.”

Ramaswamy followed with his own take, involving similar concepts but different words. “We need to start having diverse insurance options in a competitive marketplace that cover actual health, preventative medicine, diet, exercise, lifestyle, and otherwise.”

Throughout the evening, some of the most heated clashes came as candidates sparred over transgender issues and gender-affirming care. PolitiFact examined some of these claims:

DeSantis: “I did a bill in Florida to stop the gender mutilation of minors. It’s child abuse and it’s wrong. [Nikki Haley] opposes that bill. She thinks it’s fine and the law shouldn’t get involved with it.”

This claim has two parts, and each needs more context.

In May 2023, the Florida Legislature passed a bill that banned gender-affirming surgeries for minors. Experts told PolitiFact that gender-affirming surgeries are not the same as genital mutilation. And the law didn’t ban just surgeries — it banned all gender-affirming medical care, including puberty blockers and cross-sex hormones, which are supported by most major U.S. medical organizations.

Surgeries are rarely provided as part of gender-affirming care for minors.

In a June CBS interview, Haley said that when it comes to determining what care should be available for transgender youth, the “law should stay out of it, and I think parents should handle it.” She followed up by saying, “When that child becomes 18, if they want to make more of a permanent change, they can do that.”

Haley’s campaign pointed to a May ABC appearance in which she said that a minor shouldn’t have a “gender-changing procedure” and opposed “taxpayer dollars” funding one.

Haley: “I said that if you have to be 18 to get a tattoo, you should have to be 18 to have anything done to change your gender.”

During the debate, Haley likened her position on gender-affirming care for minors — that it should be up to parents until the child is 18 — to age requirements for getting a tattoo: “I said that if you have to be 18 to get a tattoo, you should have to be 18 to have anything done to change your gender.”

We’ve heard that comparison before. For what it’s worth, two-thirds of U.S. states allow minors to get tattoos if their parents consent. And medical experts have told us gender-affirming care is in many cases considered medically necessary, while tattoos are cosmetic.

Ramaswamy: “I think the North Star here is transgenderism is a mental health disorder.”

PolitiFact rated Ramaswamy’s claim False after he introduced it at the second primary debate.

In the past, the medical community viewed the experience of being transgender as a “disorder,” but they no longer agree on that categorization. In the past decade, diagnostic manuals published by the World Health Organization and the American Psychiatric Association contained updated language to clarify that being transgender is not a mental illness. Experts told us that persistent gender dysphoria can cause other mental health issues, but it is not itself a mental health disorder.

Food Sovereignty Movement Sprouts as Bison Return to Indigenous Communities

BOZEMAN, Mont. — Behind American Indian Hall on the Montana State University campus, ancient life is growing.

Six-foot-tall corn plants tower over large green squash and black-and-yellow sunflowers. Around the perimeter, stalks of sweetgrass grow.

The seeds for some of these plants grew for millennia in Native Americans’ gardens along the upper Missouri River. It’s one of several Native American ancestral gardens growing in the Bozeman area, totaling about an acre. Though small, the garden is part of a larger, multifaceted effort around the country to promote “food sovereignty” for reservations and tribal members off reservation, and to reclaim aspects of Native American food and culture that flourished in North America for thousands of years before the arrival of European settlers. Restoring bison to reservations, developing community food gardens with ancestral seeds, understanding and collecting wild fruits and vegetables, and learning how to cook tasty meals with traditional ingredients are all part of the movement.

“We are learning to care for plant knowledge, growing Indigenous gardens, cultivating ancestral seeds — really old seeds from our relatives the Mandan, Hidatsa, and Arikara: corn, beans, squash, and sunflowers,” said Jill Falcon Ramaker, an assistant professor of community nutrition and sustainable food systems at Montana State. She is a member of the Turtle Mountain Band of Anishinaabe.

“A lot of what we are doing here at the university is cultural knowledge regeneration,” she said.

But it also has a very practical application: to provide healthier, cheaper, and more reliable food supplies for reservations, which are often a long way from supermarkets, and where processed foods have helped produce an epidemic of diabetes and heart disease.

One woman in the foreground, wearing a baseball hat and plaid shirt, places a stake next to a small green plant in a garden. In the background, another woman holds two stakes in the garden.
Buffalo Nations student fellowship coordinators Sophia Moreno (Apsáalooke/Laguna Pueblo/Ojibwe-Cree) (left) and Jacob Zimmerer work at the Indigenous gardens at American Indian Hall on the Montana State University campus. (Adrian Sanchez-Gonzalez/Montana State University)

Many reservations are food deserts where prices are high and processed food is often easier to come by than fresh food. The Montana Food Distribution Study, a 2020 paper funded by the U.S. Department of Agriculture, found that the median cost in the state of a collection of items typically purchased at a grocery store is 23% higher on a reservation than off.

“With food sovereignty we are looking at the ability to put that healthy food and ancestral foods which we used to survive for thousands of years, putting those foods back on the table,” Ramaker said. What that means exactly can vary by region, depending on the traditional food sources, from wild rice in the Midwest to salmon on the Pacific coast.

Central to the effort, especially in Montana, are bison, also referred to as buffalo. In 2014, 13 Native nations from eight reservations in the U.S. and Canada came together to sign the Buffalo Treaty, an agreement to return bison to 6.3 million acres that sought “to welcome BUFFALO to once again live among us as CREATOR intended by doing everything within our means so WE and BUFFALO will once again live together to nurture each other culturally and spiritually.”

A photo of a woman smiling for the camera while canning hot sauce.
Maritza Arellano, a dietetic intern at Montana State University, works with the Buffalo Nations Food Systems Initiative to can hot sauce made from produce from an Indigenous garden in Bozeman, Montana.(Chere Jiusto for KFF Health News)

Nearly a decade later, dozens of tribes have buffalo herds, including all seven reservations in Montana.

The buffalo-centered food system was a success for thousands of years, according to Ramaker, who directs both the regional program, known as the Buffalo Nations Food Systems Initiative — a collaboration with the Native American Studies Department and College of Education, Health and Human Development at Montana State — and the Montana-specific effort, known as the Montana Indigenous Food Sovereignty Initiative. It wasn’t a hand-to-mouth existence, she wrote in an article for Montana State, but a “knowledge of a vast landscape, including an intimate understanding of animals, plants, season, and climate, passed down for millennia and retained as a matter of life and death.”

With bison meat at the center of the efforts, the BNFSI is working to bring other foods from the northern Plains Native American diet in line with modern palates.

The BNFSI has received a $5 million grant from the U.S. Department of Agriculture to carry out that work, in partnership with Nueta Hidatsa Sahnish College in New Town, North Dakota.

Two women and one man lean over an orange blanket laid in the grass beside a garden, looking at bags of seeds
From left to right, James Vallie (Apsáalooke/Anishinaabe), Angela Bear Claw (Apsáalooke), and Jill Falcon Ramaker (Anishinaabe) plant Native seeds in the Indigenous gardens at Montana State University on June 4, 2021.(Adrian Sanchez-Gonzalez/Montana State University)
A small green, leafy plant grows out of dirt in a garden.
A plant at the Indigenous gardens outside American Indian Hall on the Montana State University campus. (Adrian Sanchez-Gonzalez/Montana State University)
The tattooed hand of a woman, wearing a circular turquoise ring and a bracelet, digs in dirt in a garden.
Breana Halimé McCullough (Karuk) plants seeds of Native crops at Montana State University in Bozeman, Montana, on June 4, 2021. (Adrian Sanchez-Gonzalez/Montana State University)

Life on reservations is partly to blame for many Native people eating processed foods, Ramaker said. Food aid from the federal government, known as the Commodity Supplemental Food Program, has long been shipped to reservations in the form of boxes full of packaged foods. “We were forced onto the reservations, where there was replacement food sent by the government — white flour, white sugar, canned meat, salt, and baking powder,” she said.

Experts say processed foods contribute to chronic inflammation, which in turn leads to heart disease, cancer, and diabetes, which occurs at three times the rate in Native Americans as it does in white people.

Studies show that people’s mental and physical health declines when they consume a processed food diet. “In the last decade there’s a growing amount of research on the impact of good nutrition on suicide ideation, attempts, and completion,” said KayAnn Miller, co-executive director of the Montana Partnership to End Childhood Hunger in Bozeman, who is also involved with the BNFSI.

A photo of a woman holding ears of corn to the camera.
Jill Falcon Ramaker, an assistant professor of community nutrition and sustainable food systems and director of the Buffalo Nations Food Systems Initiative at Montana State University, holds ears of corn grown from the seed of ancient varieties once raised by the Mandan, Hidatsa, and Arikara peoples along the Missouri River in North Dakota. With her right hand, she holds a bag of Mandan Red Clay corn. In her left is an ear each of Mandan Society and Hopi Black.(Chere Jiusto for KFF Health News)

All Native American reservations in Montana now have community gardens, and there are at least eight gardens on the Flathead Reservation north of Missoula, home to the Confederated Salish and Kootenai Tribes. The tribe is teaching members to raise vegetables, some of them made into soup that is delivered to tribal elders. This year members grew 5 tons of produce to be given away.

Ancestral seeds are part of the effort. Each year the BNFSI sends out 200 packets of seeds for ancestral crops to Indigenous people in Montana.

Creating foods that appeal to contemporary tastes is critical to the project. The BNFSI is working with Sean Sherman, the “Sioux Chef,” to turn corn, meat, and other Native foods into appealing dishes.

Sherman founded the award-winning Owamni restaurant in Minneapolis and in 2020 opened the Indigenous Food Lab, through his nonprofit, North American Traditional Indigenous Food Systems. The lab, in downtown Minneapolis, is also a restaurant and an education and training center that creates dishes using only Indigenous foods from across the country — no dairy, cane sugar, wheat flour, beef, chicken, or other ingredients from what he calls the colonizers.

“We’re not cooking like it’s 1491,” Sherman said last year on the NPR program “Fresh Air,” referring to the period before European colonization. “We’re not a museum piece or something like that. We’re trying to evolve the food into the future, using as much of the knowledge from our ancestors that we can understand and just applying it to the modern world.” Among his signature dishes are bison pot roast with hominy and roast turkey with a berry-mint sauce and black walnuts.

In consultation with Sherman, Montana State University is building the country’s second Indigenous food lab, which will be housed in a new $29 million building with a state-of-the-art kitchen, Ramaker said. It will open next year and expand the ongoing work creating recipes, holding cooking workshops, feeding MSU’s more than 800 Native students, and preparing cooking videos.

A man holds a spoon in his right hand over his cupped left hand as he stands in a restaurant kitchen wearing an apron
Chef Sean Sherman, the “Sioux Chef,” prepares cricket at his award-winning Minneapolis restaurant, Owamni, on Feb. 3. In 2020, Sherman opened the Indigenous Food Lab, through his nonprofit, North American Traditional Indigenous Food Systems. (Jaida Grey Eagle for The Washington Post via Getty Images)

Angelina Toineeta, who is Crow, is studying the BNFSI at Montana State as part of her major in agriculture. “Growing these gardens really stuck out to me,” she said. “Native American agriculture is something we’ve lost over the years, and I want to help bring that back.”

Colorado Blames Biden Team and Drugmakers for Delaying Canadian Imports

Colorado officials say their plan to import cheaper medicines from Canada has been stymied by opposition from drugmakers and inaction by the Biden administration, according to a state report obtained by KFF Health News.

The Dec. 1 report, prepared for the state legislature by Colorado’s Department of Health Care Policy & Financing, says that state officials approached 23 drugmakers in the last year about an importation program. Only four agreed even to discuss the proposal; none expressed interest in participating.

“Generally, the challenges that remain are outside state authority and rely on action by FDA and/or drug manufacturers,” the report reads.

Lawmakers in both parties, at the state and national level, have sought for decades to legalize importing drugs from Canada. Since 2020, when President Donald Trump’s administration opened the door to Canadian drug imports with regulations issued just weeks before he lost reelection, only a few states have filed applications with the Food and Drug Administration to create importation programs.

The FDA hasn’t yet ruled on any of them. Colorado filed its application in December 2022. Florida, which applied in 2020, has been waiting nearly three years for a decision from the Biden administration on its importation plan, pushed by Gov. Ron DeSantis, now a Republican presidential candidate.

FDA spokesperson Cherie Duvall-Jones said the FDA has not acted on states’ importation applications because it has not determined whether they would save significant money for consumers without posing risks to public health.

U.S. consumers pay some of the highest prices in the world for brand-name pharmaceuticals. Drugs are generally less expensive in Canada, where the government controls prices.

Under Trump, the federal government declared that importing drugs from Canada could be done safely — satisfying for the first time a condition spelled out in a 2003 law.

But Colorado officials cited another catch: The rule didn’t take into account that states would have to negotiate directly with drug manufacturers, which oppose selling their brand-name drugs in the United States at Canadian prices.

“As the federal Final Rule did not contemplate the need for this negotiation step, we have urged FDA to release further guidance regarding how states can operationalize the program with this in mind, but to date, no guidance has been released,” the Colorado report said.

Unlike many other Trump administration health policies, Biden hasn’t revoked or revised the importation rule. But his administration hasn’t shown much support for the idea, either. Health and Human Services Secretary Xavier Becerra told KFF Health News last December that he wouldn’t commit to the FDA ruling on any state application in 2023.

The president has repeatedly suggested that under his watch Americans would be able to import drugs from Canada.

During his 2020 campaign, Biden said he’d allow for the importation of drugs the government certified as safe. In 2021, he ordered the FDA to work with states to import prescription drugs from Canada. In a 2022 speech about how he planned to reduce drug prices, he cited Colorado estimates of how much people in the state could save through importation.

FDA officials responded to Colorado’s application in March by asking for more information and a smaller list of drugs to target, to prove that importation could save money. Colorado’s initial application listed 112 high-cost drugs. The state estimates residents and employers could save an average of 65% on the costs of those medicines, including drugs for diabetes, asthma, and cancer.

Colorado said it plans to submit an updated application early next year. By then, it’s possible the FDA will have ruled on Florida’s application.

The Colorado and Florida importation proposals differ. Colorado’s program is intended to directly help consumers obtain cheaper medicines. Florida’s plan aims to cut spending on drugs in government programs such as Medicaid, the prison system, and facilities run by the state Department of Children and Families.

The drug industry has argued the Trump administration didn’t properly certify that drugs imported from Canada would be safe, jeopardizing Americans’ health. Canada’s government, too, has expressed concern that U.S. imports would lead to shortages and higher prices in its country.

Drug manufacturers “will do anything to protect their golden goose that is United States consumers and patients who pay the largest amount for drugs in the world,” said Colorado state Sen. Sonya Jaquez Lewis, a Democrat, pharmacist, and leading advocate for drug importation.

The White House and Congress, she said, should force drugmakers to negotiate with states to start importation programs.

In its initial response to Colorado’s application, the FDA listed several types of information it still needed, including plans on labeling and drug eligibility, according to a March letter from the FDA to the state. Another problem, the FDA said: The state planned to import medicines across the U.S. border in Buffalo, New York. The FDA said the only port of entry it allows for medicines is in Detroit.

Colorado officials told the FDA in March that without federal approval of its application, it was having difficulty securing commitments from drug manufacturers to obtain medicines.

“It has been made clear that potential partners will be more interested in committing to participate once our program has been approved by the FDA,” Kim Bimestefer, executive director of the Colorado Department of Health Care Policy & Financing, wrote to the FDA.

“While we understand the regulatory framework does not permit for a provisional approval, we know that showing progress towards an approved program will aid in our negotiations with drug manufacturers,” she added.

Another complication is that the FDA’s rule doesn’t allow states to buy drugs directly from secondary drug wholesalers. Instead, they must purchase medicines directly from manufacturers, said Marc Williams, a spokesperson for the Colorado agency.

That’s proven challenging because drug manufacturers have prohibited the export of products intended for sale in Canada to the U.S., Williams said.

“Without their permission and a supply agreement directly with a manufacturer, Colorado is unable to buy and import these lower-priced drugs that would save people money,” he said.

Social Security Clawbacks Hit a Million More People Than Agency Chief Told Congress

The Social Security Administration has demanded money back from more than 2 million people a year — more than twice as many people as the head of the agency disclosed at an October congressional hearing.

That’s according to a document KFF Health News and Cox Media Group obtained through a Freedom of Information Act request.

Acting Commissioner of the Social Security Administration Kilolo Kijakazi read aloud from the document during the hearing but repeatedly left out an entire category of beneficiaries displayed on the paper as well.

The document indicates the fallout from Social Security overpayments and clawbacks is much wider than Kijakazi acknowledged under direct questioning from a House Ways and Means subcommittee that oversees the federal agency.

In a statement for this article, SSA spokesperson Nicole Tiggemann described the numbers of people Kijakazi provided in her testimony and those she left out as “unverified.”

“We cannot confirm the accuracy of the information, and we have informed the committee,” Tiggemann said.

The numbers “were gathered quickly,” the spokesperson said. Social Security systems “were not designed to easily determine this information,” she said.

After the October hearing, KFF Health News and Cox Media Group sent Tiggemann several emails asking her to clarify whether the annual numbers Kijakazi gave to Congress included all Social Security programs or just a subset. She would not say.

For answers, the news organizations several weeks ago filed a FOIA request.

Rep. Greg Steube (R-Fla.), a member of the subcommittee, said in an interview that he wondered if the agency “intentionally deflated the numbers to not make it look as bad as it is.”

“Maybe we should have her come back in for another hearing, put her under oath,” and ask her “why she wasn’t being completely upfront about the numbers,” Steube said.

Steube said that, when he heard Kijakazi’s testimony, he thought she was giving the subcommittee the complete numbers.

At issue is the scope of a problem that has terrified many Social Security beneficiaries and plunged them into financial distress.

As KFF Health News and Cox Media Group television stations jointly reported in September, the government has been trying to recover billions of dollars from beneficiaries it says it overpaid. In many cases, the overpayments were the government’s fault.

But, even in cases where the beneficiary failed to comply with requirements, years can pass before the government catches the mistake and sends a notice demanding repayment, often within 30 days. In the meantime, the amount the beneficiary owes the government can grow to tens of thousands of dollars or more — far more than people living month to month could likely repay.

The people affected may be retired, disabled, or struggling to get by on only minimal income.

The number of people experiencing overpayments is important to know because overpayments can cause a lot of harm, said Kathleen Romig of the Center on Budget and Policy Priorities, who worked in research at the Social Security Administration and has since spent 20 years in the field of Social Security policy.

“It should be a very high priority at the agency to produce more reliable numbers,” Romig said.

A portrait of Kathleen Romig.
Kathleen Romig is director of Social Security and disability policy at the Center on Budget and Policy Priorities.(Cox Media Group)

The Social Security Administration has long quantified overpayments in dollars rather than numbers of people affected. For example, the agency’s latest annual financial report says it recovered more than $4.9 billion in overpayments in the fiscal year that ended Sept. 30 and ended that period with a cumulative uncollected overpayment balance of $23 billion.

In September, SSA’s Tiggemann said, “We do not report on the number of debtors.”

In subsequent interviews with the news organizations, some lawmakers said the agency owed the public that information. “If they’re not telling you, I can assure you that’s a question that I’m going to ask in a hearing,” said Rep. Mike Carey of Ohio, the No. 2 Republican on the subcommittee.

At an Oct. 18 hearing, Carey brought up the number of debtors and told Kijakazi, “I think it’s something that we really need to get to the bottom of.”

Then he asked, “Do we have a number of how many people have been impacted by these overpayments?”

“We do,” Kijakazi replied. “And I’m, I looked at that before I came. I’m, I’m sorry. I’m not thinking of the number right now. But I can provide that.”

Carey pressed further.

“How many people are receiving overpayment notices in a year?” he asked.

At that point, Tom Klouda, a deputy SSA commissioner, got up from his seat behind Kijakazi and handed her a piece of paper.

Reading from the page, she gave two precise numbers: 1,028,389 for the 2022 fiscal year and 986,912 for the 2023 fiscal year.

A photo of Congressman Mike Carey sitting during a House hearing.
Rep. Mike Carey (R-Ohio) listens during a House Ways and Means Committee hearing on March 9.(Bill Clark/CQ-Roll Call, Inc via Getty Images)

When Carey asked if 986,912 “individuals were getting these letters in the mail saying that there was an overpayment and that they needed to contact you guys and set up a payment plan,” Kijakazi said, “That’s right.”

“Seems like an awful lot,” Carey said.

Under further questioning from Carey, Kijakazi repeated the numbers. She said they were “under Social Security” and “for Social Security.”

Subsequently, the agency declined to clarify what Kijakazi meant by that. Replying to a series of emails, Tiggemann would not say whether the numbers included all the Social Security programs.

Instead, she implied the agency didn’t know.

“Again, our overpayment systems were not designed to easily determine the information you’re requesting,” she wrote on Nov. 29.

The document obtained via FOIA shows that the numbers Kijakazi gave at the hearing covered only two of the three Social Security benefit programs. They did not cover Supplemental Security Income, or SSI, which provides financial support for people who have little or no income or assets and are blind, otherwise disabled, or at least 65 years old.

On the paper that the deputy commissioner handed Kijakazi, overpayment counts for SSI appeared directly below the numbers she read aloud, and they were bigger: 1,118,648 people in fiscal 2022 and 1,189,642 in fiscal 2023.

The document is titled in part, “Overpayment Basic Facts.”

In the document, the numbers Kijakazi read at the hearing, which round to about 1 million people a year, are labeled “T2.” Title II of the Social Security Act covers two programs: Disability Insurance, or DI, and Old-Age and Survivors Insurance, or OASI.

The numbers Kijakazi omitted are labeled “T16.” Title XVI of the Social Security Act covers SSI.

Within the Social Security Administration, personnel use the term T16 when referring to SSI and T2 when referring to OASI and DI combined, said Romig, the former agency researcher.

It’s possible that some people who received overpayment notices through SSI also received notices through the other programs, leading to overlap between the numbers Kijakazi read at the hearing and those she didn’t provide, Romig said.

In the 2023 fiscal year, the agency paid SSI benefits to an average of 7.5 million recipients a month. Measured in dollars, the overpayment rate in SSI has been running about 8%, according to the agency’s latest annual financial report. That’s much higher than the half a percent overpayment rate for OASI and DI combined.

A written statement Kijakazi submitted to the House subcommittee included a clue that the numbers of people she gave the committee didn’t provide a complete picture. In the statement, dated Oct. 18, Kijakazi used the term “the Social Security program itself” to describe Disability Insurance and Old-Age and Survivors Insurance — but not SSI.

A press release the Ways and Means Committee issued after the hearing made no such distinction. “One Million Americans a Year Affected by Social Security’s Improper Payment Highlights Need for Reform,” it said.

The document obtained via FOIA included other new information. It showed that relatively few beneficiaries contest overpayment notices and that many appeals or requests for waivers fail.

Weeks after KFF Health News and CMG television stations published and broadcast the first stories in their series, the Social Security chief ordered a review of overpayments.

In her statement Dec. 5, the agency spokesperson said that, as part of the review, the Social Security Administration is “looking at how best to inform the Agency, the public, and Congress about this workload.”

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