Tras una cirugía de emergencia para extirpar el tumor, junto con sus ovarios, útero, trompas de Falopio y apéndice, Hughes contó que vio una publicación en Instagram en la que una mujer con cáncer uterino relacionaba su condición con alisadores químicos para el cabello.

“Casi me desmayo”, dijo desde su casa en Smyrna, Georgia.

Cuando tenía unos 4 años, su madre comenzó a aplicarle un alisador químico, o “relajante”, en el cabello cada seis u ocho semanas. “Quemaba y olía terrible”, recordó Hughes. “Pero era parte de nuestra rutina para ‘lidiar con mi cabello'”.

La rutina continuó hasta que fue a la universidad y conoció a otras mujeres negras que llevaban el cabello de forma natural. Pronto, Hughes dejó de usar alisadores.

Las presiones sociales y económicas han llevado durante mucho tiempo a las niñas y mujeres negras a alisar su cabello para cumplir con los estándares de belleza eurocéntricos. Pero los alisadores químicos tienen un olor desagradable, son costosos y a veces causan quemaduras dolorosas en el cuero cabelludo. Y ahora hay cada vez más evidencia de que podrían ser un riesgo para la salud.

Los alisadores pueden contener carcinógenos, como agentes liberadores de formaldehído, ftalatos y otros compuestos que alteran el sistema endócrino, según estudios de los Institutos Nacionales de Salud. Estas sustancias químicas pueden imitar las hormonas del cuerpo y se han vinculado con cánceres de seno, útero y ovario, muestran investigaciones.

Investigadores y médicos especializados en cáncer dicen que la aplicación frecuente y de por vida de alisadores químicos en el cabello y el cuero cabelludo de mujeres afroamericanas podría explicar por qué los cánceres relacionados con hormonas afectan de manera desproporcionada a mujeres negras en comparación con mujeres blancas.

“Lo que hay en estos productos es perjudicial”, dijo Tamarra James-Todd, profesora de epidemiología en la Escuela de Salud Pública T.H. Chan de Harvard, quien ha estudiado productos alisadores por los últimos 20 años.

James-Todd cree que los fabricantes, legisladores y médicos deberían advertir a los consumidores que los alisadores podrían causar cáncer y otros problemas de salud. Pero los reguladores han sido lentos en actuar, los médicos se han mostrado reacios a tomar la causa, y el racismo continúa dictando los estándares de moda que dificultan que las mujeres dejen los alisadores, productos tan adictivos que son conocidos como “crema adictiva” (“creamy crack”).

Michelle Obama alisó su cabello cuando Barack era presidente porque creía que los estadounidenses “no estaban preparados” para verla con trenzas, dijo la ex primera dama después de dejar la Casa Blanca. El ejército de los Estados Unidos todavía prohibía estilos populares de cabello negro, como rastas y trenzas, mientras el primer presidente negro del país estaba en el cargo.

En 2019, California se convirtió en el primer estado de casi 20 en prohibir la discriminación basada en el cabello. El año pasado, la Cámara de Representantes de los Estados Unidos aprobó una legislación similar, conocida como la Ley CROWN (Creating a Respectful and Open World of Natural Hair). Sin embargo, el proyecto de ley fracasó en el Senado.

La necesidad de legislación destaca los desafíos que enfrentan las niñas y mujeres negras en la escuela y en el lugar de trabajo.

“Tienes que elegir tus batallas”, dijo Ryland Gore, cirujana oncológica con sede en Atlanta. Gore informa a sus pacientes con cáncer de mama sobre el mayor riesgo de cáncer debido a los alisadores. A pesar de su conocimiento, Gore continúa usando alisadores químicos en su propio cabello, como lo ha hecho desde que tenía unos 7 años.

“Tu cabello cuenta una historia”, dijo.

En las conversaciones con sus pacientes, Gore a veces también habla sobre cómo las mujeres afroamericanas solían tejer mensajes en sus trenzas sobre la ruta a seguir en el Underground Railroad mientras buscaban la libertad de la esclavitud.

“Es simplemente una discusión profunda”, que abarca cultura, historia e investigación sobre las prácticas de estilo de peinados actuales, dijo. “Los datos están ahí fuera. Por lo tanto, se les debe advertir a los pacientes, y luego pueden tomar una decisión”.

La primera pista de una conexión entre los productos para el cabello y problemas de salud surgió en la década de 1990. Los médicos comenzaron a ver signos de madurez sexual en bebés y niñas negras que desarrollaban senos y vello púbico después de usar champús que contenían estrógeno o extracto placentario. Cuando las niñas dejaban de usar el champú, el desarrollo del cabello y los senos retrocedían.

Desde entonces, James-Todd y otros investigadores han vinculado compuestos químicos en productos para el cabello con una variedad de problemas de salud más prevalentes entre las mujeres negras, desde la pubertad temprana hasta el parto prematuro, la obesidad y la diabetes.

En los últimos años, los investigadores se han enfocado en una posible conexión entre los alisadores químicos y los cánceres relacionados con hormonas, como el que desarrolló Hughes, que tienden a ser más agresivos y mortales en las mujeres negras.

Un estudio de 2017 encontró que las mujeres blancas que usaban alisadores químicos tenían casi el doble de probabilidades de desarrollar cáncer de seno que aquellas que no los usaban. Debido a que la gran mayoría de las participantes negras del estudio usaban alisadores, los investigadores no pudieron probar efectivamente la asociación en mujeres negras, según afirmó la autora principal, Adana Llanos, profesora asociada de epidemiología en la Escuela de Salud Pública Mailman de la Universidad de Columbia.

Los investigadores lo probaron en 2020.

El llamado Sister Study (Estudio de las Hermanas), una importante investigación del Instituto Nacional de Ciencias de la Salud Ambiental sobre las causas del cáncer de mama y enfermedades relacionadas, hizo el seguimiento de 50,000 mujeres estadounidenses cuyas hermanas habían sido diagnosticadas con cáncer de mama y que estaban libres de cáncer cuando se inscribieron. Independientemente de la raza, las mujeres que informaron haber usado alisadores en el año anterior tenían un 18% más de probabilidades de ser diagnosticadas con cáncer de mama. Aquellas que usaron alisadores al menos cada cinco a ocho semanas tenían un 31% más de riesgo de ese cáncer.

Casi el 75% de las hermanas negras usaron alisadores en el año anterior, en comparación con solo el 3% de las hermanas blancas no hispanas. Tres cuartas partes de las mujeres negras también informaron haber usado alisadores cuando eran adolescentes, y el uso frecuente de alisadores químicos durante la adolescencia aumentó el riesgo de cáncer de mama premenopáusico.

En 2021, un análisis de los datos del Sister Study mostró que las hermanas que usaban frecuentemente alisadores o productos para el alisado tenían el doble de riesgo de cáncer de ovario. Otro análisis, en 2022, encontró que el uso frecuente aumentaba en más del doble el riesgo de cáncer de útero.

Después de que los investigadores descubrieron la relación con el cáncer de útero, algunos pidieron cambios en las políticas y otras medidas para reducir la exposición a los alisadores.

“Es hora de intervenir”, escribió Llanos y sus colegas en un editorial que acompañó el análisis del cáncer de útero. Aunque reconocen la necesidad de más investigaciones, lanzaron un “llamado a la acción”.

Nadie puede afirmar que el uso de alisadores permanentes causará cáncer, dijo Llanos en una entrevista. “Así no funciona el cáncer”, dijo, señalando que algunos fumadores nunca desarrollan cáncer de pulmón, a pesar de que el tabaquismo es un factor de riesgo conocido.

El corpus de investigación sobre los alisadores para el cabello y el cáncer es más limitado, dijo Llanos, quien dejó de usar alisadores químicos hace 15 años. Pero preguntó retóricamente: “¿Necesitamos investigar durante otros 50 años para saber que los alisadores químicos son perjudiciales?”.

Charlotte Gamble, ginecóloga oncológica cuya práctica en Washington, D.C., incluye a mujeres negras con cáncer de útero y ovario, dijo que ella y sus colegas ven los hallazgos del estudio sobre el cáncer de útero como dignos de una exploración más profunda, pero aún no deberían discutirse con los pacientes.

“Aún tengo mis dudas”, dijo. “Se necesita mucha más información”.

Mientras tanto, James-Todd y otros investigadores creen que han construido un sólido corpus de evidencia.

“Hay suficientes cosas que sí sabemos como para comenzar a tomar medidas, desarrollar intervenciones, proporcionar información útil a los médicos, pacientes y al público en general”, dijo Traci Bethea, profesora asistente en la Oficina de Salud de las Minorías e Investigación sobre Disparidades en Salud de la Universidad de Georgetown.

La responsabilidad de regular los productos de cuidado personal, incluidos los alisadores químicos para el cabello y las tinturas, que también se han vinculado con cánceres relacionados con hormonas, recae en la Administración de Alimentos y Medicamentos (FDA).

Sin embargo, la FDA no somete los productos de cuidado personal al mismo proceso de aprobación que utiliza para alimentos y medicamentos. La FDA solo restringe 11 categorías de productos químicos utilizados en cosméticos, mientras que las preocupaciones sobre los efectos en la salud han llevado a la Unión Europea a restringir al menos 2,400 sustancias.

En marzo, las representantes Ayanna Pressley (demócrata de Massachusetts) y Shontel Brown (demócrata de Ohio) pidieron a la FDA que investigara la posible amenaza para la salud que representan los alisadores químicos. Un representante de la FDA dijo que la agencia lo investigaría.

Los peinados naturales están resurgiendo entre las niñas y mujeres negras, pero muchas siguen dependiendo de la “crema adictiva”, según Dede Teteh, profesora asistente de salud pública en la Universidad Chapman.

Teteh tuvo su primer alisado permanente a los 8 años y ha luchado por dejar los alisadores de adulta. Ahora usa trenzas estilo “locs”. Hace poco, consideró alisarse químicamente el cabello para una entrevista de trabajo académica porque no quería que su cabello “fuera un obstáculo” cuando se presentara ante profesores blancos.

Teteh lideró un proyecto de investigación sobre la salud del cabello llamado “The Cost of Beauty” (El Costo de la Belleza) publicado en 2017. Ella y su equipo entrevistaron a 91 mujeres negras en el sur de California. Algunas reaccionaron de manera “combativa” ante la idea de dejar los alisadores y afirmaron que “todo puede causar cáncer”.

Sus reacciones reflejan los desafíos que enfrentan las mujeres negras en Estados Unidos, dijo Teteh.

“No es que la gente no quiera escuchar información relacionada con su salud”, dijo. “Pero quieren que la información se comparta de manera empática con la difícil situación de ser negra aquí en los Estados Unidos”.

Kara Nelson de KFF Health News colaboró con este informe.

Este artículo fue producido por KFF Health News, que publica California Healthline, un servicio editorialmente independiente de la  California Health Care Foundation. 

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

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After emergency surgery to remove the mass, along with her ovaries, uterus, fallopian tubes, and appendix, Hughes said, she saw an Instagram post in which a woman with uterine cancer linked her condition to chemical hair straighteners.

“I almost fell over,” she said from her home in Smyrna, Georgia.

When Hughes was about 4, her mother began applying a chemical straightener, or relaxer, to her hair every six to eight weeks. “It burned, and it smelled awful,” Hughes recalled. “But it was just part of our routine to ‘deal with my hair.’”

The routine continued until she went to college and met other Black women who wore their hair naturally. Soon, Hughes quit relaxers.

Social and economic pressures have long compelled Black girls and women to straighten their hair to conform to Eurocentric beauty standards. But chemical straighteners are stinky and costly and sometimes cause painful scalp burns. Mounting evidence now shows they could be a health hazard.

Relaxers can contain carcinogens, like formaldehyde-releasing agents, phthalates, and other endocrine-disrupting compounds, according to National Institutes of Health studies. The compounds can mimic the body’s hormones and have been linked to breast, uterine, and ovarian cancers, studies show.

African American women’s often frequent and lifelong application of chemical relaxers to their hair and scalp might explain why hormone-related cancers kill disproportionately more Black than white women, say researchers and cancer doctors.

“What’s in these products is harmful,” said Tamarra James-Todd, an epidemiology professor at the Harvard T.H. Chan School of Public Health, who has studied straightening products for the past 20 years.

She believes manufacturers, policymakers, and physicians should warn consumers that relaxers might cause cancer and other health problems.

But regulators have been slow to act, physicians have been reluctant to take up the cause, and racism continues to dictate fashion standards that make it tough for women to quit relaxers, products so addictive they’re known as “creamy crack.”

Michelle Obama straightened her hair when Barack served as president because she believed Americans were “not ready” to see her in braids, the former first lady said after leaving the White House. The U.S. military still prohibited popular Black hairstyles like dreadlocks and twists while the nation’s first Black president was in office.

California in 2019 became the first of nearly two dozen states to ban race-based hair discrimination. Last year, the U.S. House of Representatives passed similar legislation, known as the CROWN Act, for Creating a Respectful and Open World for Natural Hair. But the bill failed in the Senate.

The need for legislation underscores the challenges Black girls and women face at school and in the workplace.

“You have to pick your struggles,” said Atlanta-based surgical oncologist Ryland Gore. She informs her breast cancer patients about the increased cancer risk from relaxers. Despite her knowledge, however, Gore continues to use chemical straighteners on her own hair, as she has since she was about 7 years old.

“Your hair tells a story,” she said.

In conversations with patients, Gore sometimes also talks about how African American women once wove messages into their braids about the route to take on the Underground Railroad as they sought freedom from slavery.

“It’s just a deep discussion,” one that touches on culture, history, and research into current hairstyling practices, she said. “The data is out there. So patients should be warned, and then they can make a decision.”

The first hint of a connection between hair products and health issues surfaced in the 1990s. Doctors began seeing signs of sexual maturation in Black babies and young girls who developed breasts and pubic hair after using shampoo containing estrogen or placental extract. When the girls stopped using the shampoo, the hair and breast development receded, according to a study published in the journal Clinical Pediatrics in 1998.

Since then, James-Todd and other researchers have linked chemicals in hair products to a variety of health issues more prevalent among Black women — from early puberty to preterm birth, obesity, and diabetes.

In recent years, researchers have focused on a possible connection between ingredients in chemical relaxers and hormone-related cancers, like the one Hughes developed, which tend to be more aggressive and deadly in Black women.

A 2017 study found white women who used chemical relaxers were nearly twice as likely to develop breast cancer as those who did not use them. Because the vast majority of the Black study participants used relaxers, researchers could not effectively test the association in Black women, said lead author Adana Llanos, an associate professor of epidemiology at Columbia University’s Mailman School of Public Health.

Researchers did test it in 2020.

The so-called Sister Study, a landmark National Institute of Environmental Health Sciences investigation into the causes of breast cancer and related diseases, followed 50,000 U.S. women whose sisters had been diagnosed with breast cancer and who were cancer-free when they enrolled. Regardless of race, women who reported using relaxers in the prior year were 18% more likely to be diagnosed with breast cancer. Those who used relaxers at least every five to eight weeks had a 31% higher breast cancer risk.

Nearly 75% of the Black sisters used relaxers in the prior year, compared with only 3% of the non-Hispanic white sisters. Three-quarters of Black women also self-reported using the straighteners as adolescents, and frequent use of chemical straighteners during adolescence raised the risk of pre-menopausal breast cancer, a 2021 NIH-funded study in the International Journal of Cancer found.

Another 2021 analysis of the Sister Study data showed sisters who self-reported that they frequently used relaxers or pressing products doubled their ovarian cancer risk. In 2022, another study found frequent use more than doubled uterine cancer risk.

After researchers discovered the link with uterine cancer, some called for policy changes and other measures to reduce exposure to chemical relaxers.

“It is time to intervene,” Llanos and her colleagues wrote in a Journal of the National Cancer Institute editorial accompanying the uterine cancer analysis. While acknowledging the need for more research, they issued a “call for action.”

No one can say that using permanent hair straighteners will give you cancer, Llanos said in an interview. “That’s not how cancer works,” she said, noting that some smokers never develop lung cancer, despite tobacco use being a known risk factor.

The body of research linking hair straighteners and cancer is more limited, said Llanos, who quit using chemical relaxers 15 years ago. But, she asked rhetorically, “Do we need to do the research for 50 more years to know that chemical relaxers are harmful?”

Charlotte Gamble, a gynecological oncologist whose Washington, D.C., practice includes Black women with uterine and ovarian cancer, said she and her colleagues see the uterine cancer study findings as worthy of further exploration — but not yet worthy of discussion with patients.

“The jury’s out for me personally,” she said. “There’s so much more data that’s needed.”

Meanwhile, James-Todd and other researchers believe they have built a solid body of evidence.

“There are enough things we do know to begin taking action, developing interventions, providing useful information to clinicians and patients and the general public,” said Traci Bethea, an assistant professor in the Office of Minority Health and Health Disparities Research at Georgetown University.

Responsibility for regulating personal-care products, including chemical hair straighteners and hair dyes — which also have been linked to hormone-related cancers — lies with the Food and Drug Administration. But the FDA does not subject personal-care products to the same approval process it uses for food and drugs. The FDA restricts only 11 categories of chemicals used in cosmetics, while concerns about health effects have prompted the European Union to restrict the use of at least 2,400 substances.

In March, Reps. Ayanna Pressley (D-Mass.) and Shontel Brown (D-Ohio) asked the FDA to investigate the potential health threat posed by chemical relaxers. An FDA representative said the agency would look into it.

Natural hairstyles are enjoying a resurgence among Black girls and women, but many continue to rely on the creamy crack, said Dede Teteh, an assistant professor of public health at Chapman University.

She had her first straightening perm at 8 and has struggled to withdraw from relaxers as an adult, said Teteh, who now wears locs. Not long ago, she considered chemically straightening her hair for an academic job interview because she didn’t want her hair to “be a hindrance” when she appeared before white professors.

Teteh led “The Cost of Beauty,” a hair-health research project published in 2017. She and her team interviewed 91 Black women in Southern California. Some became “combative” at the idea of quitting relaxers and claimed “everything can cause cancer.”

Their reactions speak to the challenges Black women face in America, Teteh said.

“It’s not that people do not want to hear the information related to their health,” she said. “But they want people to share the information in a way that it’s really empathetic to the plight of being Black here in the United States.”

Kara Nelson of KFF Health News contributed to this report.

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

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

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This story can be republished for free (details).

In 14 states, these councils have the ultimate say on the money, which comes from companies that made, distributed, or sold opioid painkillers, including Purdue Pharma, Johnson & Johnson, and Walmart. In 24 other states, plus Washington, D.C., the councils establish budget priorities and make recommendations. Those will affect whether opioid settlement funds go, for example, to improve addiction treatment programs and recovery houses or for more narcotics detectives and prisons.

KFF Health News, along with Johns Hopkins University and Shatterproof, a national nonprofit focused on the addiction crisis, gathered and analyzed data on council members in all states to create the first database of its kind.

The data shows that councils are as unique as states are from one another. They vary in size, power, and the amount of funds they oversee. Members run the gamut from doctors, researchers, and county health directors to law enforcement officers, town managers, and business owners, as well as people in recovery and parents who’ve lost children to addiction.

“The overdose crisis is incredibly complex, and it demands more than just money,” said Rollie Martinson, a policy associate with the nonprofit Community Education Group, which is tracking settlement spending across Appalachia. “We also need the right people in charge of that money.”

That’s the $50 billion question: Are the right people steering the decisions? Already, criticism of the councils has been rife, with stakeholders pointing out shortcomings, from overrepresentation to underrepresentation and many issues in between. For example:

• Council membership doesn’t always align with the states’ hardest-hit populations — by race or geography.
• Heavy presence of specific professional groups — treatment providers, health care executives, or law enforcement officials, for example — might mean money gets directed to those particular interests at the expense of others.
• Few seats are reserved for people who’ve dealt with a substance use disorder themselves or supported a family member with one.

Admittedly, no one can design a perfect council. There’s no agreement on what that would even look like. But when a pile of money this big is at stake, everyone wants in on the action.

More than $3 billion of opioid settlement funds has already landed in government coffers, with installments to come through 2038. The money is meant as restitution for the hundreds of thousands of Americans who have died from drug overdoses in recent decades.

But what restitution looks like depends on whom you ask. People running syringe service programs might suggest spending money immediately on the overdose reversal medication naloxone, while hospital officials might advocate for longer-term investments to increase staffing and treatment beds.

“People naturally want money to go toward their own field or interest,” said Kristen Pendergrass, vice president of state policy at Shatterproof.

And that can trigger hand-wringing.

In many parts of the country, for instance, people who support syringe service programs or similar interventions worry that councils with high numbers of police officers and sheriffs will instead direct large portions of the money to buy squad cars and bulletproof vests. And vice versa.

In most states, though, law enforcement and criminal justice officials make up fewer than one-fifth of council members. In Alaska and Pennsylvania, for instance, they’re not represented at all.

Outliers exist, of course. Tennessee’s 15-member council has two sheriffs, one current and one former district attorney general, a criminal court judge, and a special agent from the state Bureau of Investigation. But like many other councils, it hasn’t awarded funds to specific groups yet, so it’s too soon to tell how the council makeup will influence those decisions.

Pendergrass and Johns Hopkins researcher Sara Whaley, who together compiled the list of council members, say criticism of councils drawing too heavily from one field, geographic area, or race is not just a matter of political correctness, but of practicality.

“Having diverse representation in the room is going to make sure there is a balance on how the funds are spent,” Pendergrass said.

To this end, Courtney Gary-Allen, organizing director for the Maine Recovery Advocacy Project, and her colleagues chose early on to ensure their state’s 15-member council included people who support what’s known as harm reduction, a politically controversial strategy that aims to minimize the risks of using drugs. Ultimately, this push led to the appointment of six candidates, including Gary-Allen, to the panel. Most have personal experience with addiction.

“I feel very strongly that if these six folks weren’t on the council, harm reduction wouldn’t get a single dollar,” she said.

Others are starting to focus on potential lost opportunities.

In New Jersey, Elizabeth Burke Beaty, who is in recovery from substance use disorder, has noticed that most members of her state’s council represent urban enclaves near New York City and Philadelphia. She worries they’ll direct money to their home bases and exclude rural counties, which have the highest rates of overdose deaths and unique barriers to recovery, such as a lack of doctors to treat addiction and transportation to faraway clinics.

Natalie Hamilton, a spokesperson for New Jersey Gov. Phil Murphy, a Democrat who appointed the members, said the council represents “a wide geographic region,” including seven of the state’s 21 counties.

But only two of those represented — Burlington and Hunterdon counties — are considered rural by the state’s Office of Rural Health needs assessment. The state’s hardest-hit rural counties lack a seat at the table.

Now that most of the council seats nationwide are filled, worries about racial equity are growing.

Louisiana, where nearly a third of the population is Black, has no Black council members. In Ohio, where Black residents are dying of overdoses at the highest rates, only one of the 29 council members is Black.

“There’s this perception that this money is not for people who look like me,” said Philip Rutherford, who is chief operating officer of Faces & Voices of Recovery and is Black. His group organizes people in recovery to advocate on addiction issues.

Research shows Black Americans have the fastest-rising overdose death rates and face the most barriers to gold-standard treatments.

In several states, residents have lamented the lack of council members with firsthand knowledge of addiction, who can direct settlement dollars based on personal experiences with the treatment and criminal justice systems. Instead, councils are saturated with treatment providers and health care organizations.

And this, too, raises eyebrows.

“Service providers are going to have a monetary interest,” said Tracie M. Gardner, who leads policy advocacy at the New York-based Legal Action Center. Although most are good people running good treatment programs, they have an inherent conflict with the goal of making people well and stable, she said.

“That is work to put treatment programs out of business,” Gardner said. “We must never forget the business model. It was there for HIV, it was there for covid, and it’s there for the overdose epidemic.”

Councils in South Carolina and New York have already seen some controversy in this vein — when organizations associated with members pursued or were awarded funding. It’s not a particularly surprising occurrence, since the members are chosen for their prominent work in the field.

Both states’ councils have robust conflict-of-interest policies, requiring members to disclose professional and financial connections. New York also has a law precluding council members from using their position for financial gain, and South Carolina uses a rubric to objectively score applications.

That these situations cause alarm regardless shows how much hope and desperation is tied up in this money — and the decisions over who controls it.

“This is the biggest infusion of funding into the addiction treatment field in at least 50 years,” said Gardner. “It’s money coming into a starved system.”

Database Methodology

The list of council members’ names used to build the database was compiled by Johns Hopkins University’s Sara Whaley and Henry Larweh and Shatterproof’s Kristen Pendergrass and Eesha Kulkarni. All council members, even those without voting power, were listed.

Although many states have councils to address the opioid crisis generally, the database focused specifically on councils overseeing the opioid settlement funds. A council’s scope of power was classified as “decision-making” if it directly controls allocations. “Advisory” means the council provides recommendations to another body, which makes final funding decisions.

The data is current as of June 9, 2023.

KFF Health News’ Aneri Pattani, Colleen DeGuzman, and Megan Kalata analyzed the data to determine which categories council members represent, based on the following rules:

— Each council member can be counted in only one category. There is no duplication.

— People should be given the most descriptive categorization possible. For example, attorneys general are “elected officials,” but it is more specific to say they are “law enforcement and criminal justice” officials.

— A “government representative” is typically a government employee who is not elected and does not fit into any other descriptive category — for example, a non-elected county manager.

— People who provide direct services to patients or clients, such as physicians, nurses, therapists, and social workers, are classified as “medical and social service providers.” People with more administrative roles are typically classified as “public” or “private health and human services,” based on their organization’s public or private affiliation.

— “Lived or shared experience” refers to someone who has personally experienced a substance use disorder, has a family member with one, or has lost a loved one to the disease. Because people’s addiction experiences are not always public, only individuals explicitly appointed because of their firsthand connection or to fill a seat reserved for someone with that experience were categorized as such.

KFF Health News’ Colleen DeGuzman and Megan Kalata contributed to this report.

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

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The change comes after state lawmakers, in the midst of a national upsurge in maternal deaths, decided not to extend a sunset date for the panel set in 2019, when they established the state’s Maternal Mortality Review Committee, or MMRC.

The committee was composed of a family medicine physician, an OB-GYN, a midwife, a coroner, and a social worker, in addition to others who track deaths in Idaho that occur from pregnancy-related complications. Wyoming studies its maternal deaths through a shared committee with Utah. All other states, as well as Washington, D.C., New York City, Philadelphia, and Puerto Rico, have an MMRC, according to the Guttmacher Institute, a reproductive rights research group.

A majority of the state committees were established within the past decade as federal officials scrambled to understand state and local data to address gaps in maternal care. The committees review deaths that occur within a year of pregnancy and identify trends, share findings, and suggest policy changes.

Liz Woodruff, executive director of the Idaho Academy of Family Physicians, said she was “incredibly disappointed” by the legislature’s decision to scuttle the committee. “It seems relevant that the state of Idaho supports a committee that works toward preventing the deaths of pregnant women,” she said. “This should be easy.”

The committee disbanded despite a high rate of maternal mortality in the United States that exceeds those of other high-income countries. The U.S. recorded 23.8 maternal deaths per 100,000 live births in 2020, compared with 8.4 in Canada and 3.6 in Germany, according to the Organization for Economic Cooperation and Development and the Centers for Disease Control and Prevention.

And the U.S. rate is sharply rising. In March, a few weeks before Idaho lawmakers adjourned their 2023 session, the CDC released data that showed the maternal mortality rate in the U.S. climbed in 2021 to 32.9 deaths per 100,000 live births.

Idaho has a particularly acute problem. Its pregnancy-related mortality ratio was 41.8 pregnancy-related deaths per 100,000 live births in 2020, according to the Maternal Mortality Review Committee report from that year.

Hillarie Hagen of Idaho Voices for Children, a nonprofit focused on low- and moderate-income families, said that the committee used the Idaho-specific data to do deep-dive analyses and that an information void would be left by shuttering the board.

“How do we make decisions and policy decisions to improve the health of mothers and their babies if we’re not tracking the data?” she asked. “From our perspective, having consistent data and trends shown over time helps make more sound policy decisions.”

The decision to disband the board came as two hospitals that serve rural areas announced they would stop providing services for expectant mothers. One of the hospitals cited trouble recruiting and retaining OB-GYNs after the state last summer enacted one of the strictest abortion bans in the country.

The committee, tasked with investigating deaths both individually and collectively, found that almost half of the maternal deaths in Idaho in 2020 occurred after delivery.

Amelia Huntsberger, an OB-GYN and a member of the committee, noted also that patients covered by Medicaid during pregnancy are overrepresented in maternal death rates, which led the panel to recommend expansion of postpartum Medicaid coverage to 12 months rather than the current 60 days.

Huntsberger made national headlines this year when she announced plans to leave both her job and the state, citing the state’s abortion ban and the move to dissolve the MMRC.

But in their legislative session, Idaho lawmakers decided not to advance a bill that would have embraced the committee’s recommendation to expand postpartum Medicaid coverage.

The legislation creating the review committee included a “sunset clause” to dissolve the committee on July 1, 2023. Following a contentious session of the Health and Welfare Committee of the Idaho House of Representatives in February, House Bill 81, which would have renewed the committee, failed to advance.

Republican state Rep. Dori Healey said she sponsored the bill because of her work as an advanced practice registered nurse when the legislature is out of session. “For me, being in the health care field, I think it’s always important to understand the why behind anything. Why is this happening? What can we do better?” Healey said. “I feel like in health care we can only improve with knowledge.”

Healey said she hadn’t anticipated the strong opposition to the bill. In declining to advance it, lawmakers cited costs of running the panel, although some, like Huntsberger, say its operation was covered by a federal grant.

The MMRC was funded by the federal Title V Maternal and Child Health Block Grant program, aimed at improving the health of mothers, infants, and children. Idaho has received more than $3 million annually in Title V funds in recent years, according to statistics cited by Huntsberger.

The MMRC, whose members say annual operation costs stand at about $15,000, was deemed budget-neutral, running at no cost to the state.

In an interview with KFF Health News, Marco Erickson, vice chair of the Health and Welfare Committee, said Idaho’s Republican Party has been focused on reducing government spending. He said the same maternal data could be adequately culled through epidemiology reports already published by the Department of Health and Welfare.

“Anytime that there is a death of a mother and child, there is value in evaluating why it occurred,” Erickson said. “The whole committee saw the importance but saw there was another way to do it. It wasn’t that they didn’t think it was valuable.”

Erickson, who previously oversaw elements of maternal and child health in his role as a health program manager for Nevada’s Division of Public and Behavioral Health, said that information could become siloed in government, but it was worthwhile to improve existing bodies, rather than creating a committee anew.

“I think it could be covered elsewhere, and if it’s not being done, they need to make a loud voice to cover it in the existing programs,” he said. “We’re happy to sit down together to find a solution that works.”

The lobbying group Idaho Freedom Foundation celebrated the end of the committee, contending it was a “vehicle to promote more government intervention in health care,” and citing the group’s recommendation to extend Medicaid coverage to mothers for 12 months postpartum.

Elke Shaw-Tulloch, public health administrator at the Department of Health and Welfare, said the department would “continue to collect raw data on maternal deaths and gather as much data as possible through limited, existing sources.” But, she said, it will not have the ability to compel reporting on cases or convene committee members to investigate deaths.

“We are currently assessing what actions we can take and working with stakeholders to address solutions moving forward,” she said.

A group to do so has not yet convened since the legislative session ended in April, although stakeholders say they will focus on bringing another bill before the Idaho Legislature to reinstitute the committee in the 2024 session.

Stacy Seyb, a maternal-fetal specialist who grew up in rural western Kansas and chaired the committee until its dissolution, said that supporting medical providers in more rural areas was part of his lifelong mission and that the work won’t necessarily stop.

“We knew once it didn’t get out of committee that ‘Oh, well, we’re sunk,’” Seyb said. “I know one thing we want to do is collect as much information as we can over the year. Whether it will get reviewed or not, I don’t know.”

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La decisión dijo que es inconstitucional que los colegios y universidades usen la raza como un factor en la admisión de estudiantes, lo que afectará las decisiones de inscripción en instituciones educativas públicas y privadas, incluidas las facultades de medicina.

Al igual que otras instituciones académicas, las escuelas de medicina han tenido en cuenta durante mucho tiempo la raza en las decisiones de admisión. Las escuelas operaron bajo el principio, y hay evidencia considerable de que están en lo correcto, de que una fuerza laboral de médicos más diversa hace un mejor trabajo tratando a pacientes de minorías.

La “decisión demuestra una falta de comprensión de los beneficios críticos de la diversidad racial y étnica en los entornos educativos y una falta de reconocimiento de la necesidad urgente de abordar las desigualdades en salud”, indica una declaración de David Skorton, presidente y director ejecutivo de la Association of American Medical Colleges (AAMC), y de Frank Trinity, su director legal.

John Roberts, el presidente de la Corte Suprema, escribió la opinión de la mayoría. Sostuvo que los programas de admisión de los acusados Harvard College y la Universidad de Carolina del Norte violan la cláusula de igualdad de protección de la Enmienda 14, que prohíbe la discriminación racial. La decisión anuló décadas de precedentes legales que habían permitido a los colegios y universidades evaluar a los posibles estudiantes por su raza, además de factores como los registros académicos y los puntajes en pruebas.

En disidencia, la jueza asociada Sonia Sotomayor escribió en nombre de los tres jueces liberales de la corte que el fallo “consolida una regla superficial de daltonismo como principio constitucional en una sociedad endémicamente segregada donde la raza siempre ha importado y continúa importando”.

¿Qué significa este fallo para las escuelas de medicina?

La decisión puede tener serias repercusiones, dicen educadores.

La AAMC, que representa a más de 500 facultades de medicina y hospitales universitarios, presentó un escrito ante el tribunal argumentando que la diversidad en la educación médica “literalmente salva vidas” al garantizar que los médicos, enfermeras y otros profesionales de salud puedan atender de manera competente a una población cada vez más diversa.

“La diversidad en los proveedores de atención médica contribuye a aumentar la confianza de los estudiantes, aprendices y médicos para trabajar con poblaciones de pacientes que son diferentes a sus propias identidades”, dijo Norma Poll-Hunter, directora sénior de diversidad de la fuerza laboral en la AAMC.

Aunque es imposible predecir el impacto general del fallo de la corte, observar algunos de los nueve estados que ya tienen prohibiciones sobre las admisiones universitarias basadas en la raza puede proporcionar pistas. Un análisis de las prohibiciones en seis estados encontró que la inscripción de estudiantes de color en las escuelas de medicina cayó cerca de un 17% después de que se instituyeron las prohibiciones.

¿Qué ocurre con los pacientes?

Al momento es difícil de decir.

A pesar de que Estados Unidos tiene uno de los sistemas de investigación médica y atención clínica más avanzados del mundo, a los negros y algunas otras minorías a menudo les va peor que a los blancos no hispanos en una variedad de medidas de salud.

Su esperanza de vida es más corta: 65,2 años para los nativos americanos y los nativos de Alaska y 70,8 para los negros en 2021, frente a 76,4 para los blancos, según KFF. Los bebés negros y de las Islas del Pacífico tenían aproximadamente el doble de probabilidades de morir que los bebés blancos, y las mujeres de esos grupos minoritarios tenían las tasas más altas de mortalidad relacionada con el embarazo en 2021.

Investigaciones muestran que las personas de todas las razas tienden a preferir ver médicos que son similares a ellos en cuanto a raza o etnia, según Poll-Hunter. Cuando los pacientes son de la misma raza o género que su proveedor, reportan mayores niveles de satisfacción y confianza, y una mejor comunicación. También pueden tener mejores resultados de salud, revela la investigación.

Por ejemplo, en un estudio de 1,8 millones de bebés nacidos en hospitales de Florida entre 1992 y 2015, los recién nacidos negros tenían la mitad menos de probabilidades de morir cuando eran atendidos por médicos negros que cuando sus médicos eran blancos no hispanos. Históricamente, la investigación se ha centrado en los recién nacidos blancos con médicos blancos, dijo el autor principal del estudio, Brad Greenwood, profesor de sistemas de información y gestión de operaciones en la Universidad George Mason.

“En la medida en que los médicos de un grupo social externo tengan más probabilidades de ser conscientes de los desafíos y problemas que surgen al tratar a su grupo, es lógico pensar que estos médicos pueden estar mejor equipados para tratar a pacientes con necesidades complejas”, según el estudio.

Sin embargo, la solución no es tratar de garantizar que todos los pacientes negros sean atendidos por médicos negros, dijo Greenwood.

“La medicina de Jim Crow no va a resolver esto”, dijo, refiriéndose a las leyes promulgadas en los siglos XIX y XX que imponían la segregación racial.

Garantizar una base médica diversa puede mejorar la atención de todos los pacientes, incluidos los de grupos marginados. “A medida que aumenta la diversidad, la variedad de opiniones aumenta el alcance de cómo las personas piensan sobre las cosas y expresan las mejores prácticas”, dijo.

Do No Harm, un grupo de profesionales médicos y de políticas que se oponen a las admisiones a las escuelas de medicina con conciencia racial y otras políticas que incorporan consideraciones basadas en la identidad en la toma de decisiones de atención médica, dice que la admisión con conciencia racial se trata de discriminación, no de diversidad.

“Nuestra opinión es que cualquiera que ingrese a la atención médica debe ser el más calificado”, dijo Stanley Goldfarb, quien preside la junta directiva de Do No Harm. “No importa el género o la raza. Lo único que importa es que sean personas buenas, éticas y buenas en lo que hacen”.

Goldfarb citó estudios que no mostraron “ninguna relación” entre la concordancia de raza o etnia y la calidad de la comunicación, y evidencia “no concluyente” para los resultados de salud de los pacientes.

La primera clase de la escuela de medicina que se verá afectada será la clase de 2028. Algunos expertos han sugerido que las universidades y las escuelas de medicina pueden adoptar políticas que tengan en cuenta los ingresos o la riqueza familiar al determinar a quién admitir. Después de que California prohibiera las admisiones basadas en la raza en 1996, la escuela de medicina de la Universidad de California-Davis cambió su proceso para poner menos énfasis en los puntajes y calificaciones del MCAT y más en las medidas socioeconómicas, según Stat.

Poll-Hunter, de la AAMC, no está convencida. “No hay sustituto para la raza”, dijo. “La realidad es que en Estados Unidos tenemos una historia de exclusión, desplazamiento y colonización tal que no podemos ignorar la realidad de la raza”.

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The decision found it is unconstitutional for colleges and universities to use race as a factor in student admissions, which will affect enrollment decisions at public and private educational institutions, including medical schools.

Like other academic institutions, medical schools have long factored race into admission decisions. The schools operated under the principle — and there is considerable evidence they are correct — that a more diverse workforce of doctors does a better job of treating diverse patients.

The “decision demonstrates a lack of understanding of the critical benefits of racial and ethnic diversity in educational settings and a failure to recognize the urgent need to address health inequities,” read a statement from David Skorton, president and CEO of the Association of American Medical Colleges, and Frank Trinity, its chief legal officer.

Chief Justice John Roberts wrote the majority opinion. It held that the admissions programs of defendants Harvard College and the University of North Carolina violate the equal protection clause of the 14th Amendment, which prohibits racial discrimination. The decision overturned decades of legal precedent that had allowed colleges and universities to evaluate prospective students by their race, in addition to factors such as academic records and test scores.

In a dissent, Associate Justice Sonia Sotomayor wrote on behalf of the court’s three liberal justices that the ruling “cements a superficial rule of colorblindness as a constitutional principle in an endemically segregated society where race has always mattered and continues to matter.”

What Does the Ruling Mean for Med Schools?

The decision may have serious repercussions, medical educators say.

The AAMC, which represents more than 500 medical schools and teaching hospitals, filed an amicus brief with the court arguing that diversity in medical education “literally saves lives” by ensuring that doctors, nurses, and other medical professionals can competently care for an increasingly diverse population.

“Diversity in health care providers contributes to increased student, trainee, and physician confidence in working with patient populations who are different from their own identities,” said Norma Poll-Hunter, senior director of workforce diversity at the AAMC.

Although it’s impossible to predict the full impact of the court’s ruling, looking to some of the nine states that already have bans on race-conscious college admissions may provide clues. An analysis of bans in six states found that medical school enrollment of students of color who were members of underrepresented groups fell roughly 17% after the bans were instituted.

What About Patients?

At this point it’s hard to say.

Despite the United States having one of the world’s most advanced systems of medical research and clinical care, Black people and some other minorities often fare worse than white people across a range of health measures. Their life expectancies are shorter: 65.2 years for American Indian and Alaska Native people and 70.8 for Blacks in 2021, versus 76.4 for whites, according to KFF. Black and AIAN infants were roughly twice as likely to die as white infants, and women in those minority groups had the highest rates of mortality related to pregnancy in 2021.

Research shows people of all races tend to prefer to see physicians who are similar to them in race or ethnicity, according to Poll-Hunter. When patients are of the same race as their provider, they report higher levels of satisfaction and trust and better communication.

When patients are of the same race or gender as their provider, they may also have better health outcomes, research shows.

For example, in a study of 1.8 million infants born in Florida hospitals between 1992 and 2015, Black newborns were half as likely to die when cared for by Black physicians as when their doctors were white. Research has historically focused on white newborns with white doctors, said the study’s lead author, Brad Greenwood, a professor of information systems and operations management at George Mason University.

“To the extent that physicians of a social outgroup are more likely to be aware of the challenges and issues that arise when treating their group, it stands to reason that these physicians may be more equipped to treat patients with complex needs,” according to the study.

However, the solution is not to try to ensure all Black patients are seen by Black physicians, Greenwood said.

“Jim Crow-ing medicine is not going to solve this,” he said, referring to laws enacted in the 19th and 20th centuries that enforced racial segregation.

Ensuring a diverse physician base can improve care for all patients, including those from marginalized groups. “As you increase diversity, the diversity of opinion increases the scope of how people think about things and express best practices,” he said.

Do No Harm, a group of medical and policy professionals who oppose race-conscious medical school admissions and other policies that incorporate identity-based considerations into health care decision-making, says race-conscious admission is about discrimination, not diversity.

“Our view is that whoever gets into health care should be the most qualified,” said Stanley Goldfarb, who chairs the board of Do No Harm. “It doesn’t matter the gender or the race. The only thing that matters is that they’re good, ethical people and good at what they do.”

Goldfarb cited studies that showed “no relationship” between race or ethnicity concordance and the quality of communication, and “inconclusive” evidence for patient outcomes.

The first med school class that will be affected will be the class of 2028. Some experts have suggested that colleges and medical schools may adopt policies that take income or family wealth into account when determining whom to admit. After California banned race-conscious admissions in 1996, the medical school at the University of California-Davis upended its process to put less emphasis on MCAT scores and grades and more on socioeconomic measures, according to Stat.

Poll-Hunter, with the AAMC, isn’t convinced. “There’s no substitute or proxy for race,” she said. “The reality is that in the United States we have a history of exclusion, displacement, and colonization such that we can’t ignore the reality of race.”

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Although Callen isn’t commonly considered a household name, visitors passing through the new $120 million International African American Museum that opened this week will learn about her work.

The Callen display serves as both a celebration of Black achievement in medicine and a reminder that the origins of modern-day health disparities are rooted in history and racism. More than 100 years after Callen launched her midwifery career, South Carolina remains one of the deadliest states for Black mothers and babies and continues to battle troubling health inequities.

“We want to constantly cause people to recognize that there isn’t that much distance between past and present,” said Felice Knight, director of education at the new museum, which was more than 20 years in the making.

The galleries span centuries of trauma and triumph. But what sets this museum apart from other sites dedicated to Black history is its location. It is built on Gadsden’s Wharf — where tens of thousands of enslaved Africans first stepped foot in America after their capture and two-month transport across the Atlantic Ocean.

“That fact alone makes it probably the most significant landing spot for Africans in North America,” said Nic Butler, a historian for the Charleston County Public Library.

During the two years leading up to 1808, when the importation of enslaved people from foreign countries to the United States became a federal crime, it’s likely more Africans were sold into slavery at Gadsden’s Wharf than at any other site in America, Butler said. Other states had already made the importation of slaves from Africa illegal; South Carolina was the last holdout.

“It was peak madness of the African slave trade in North America,” he said, adding that the health of enslaved people at Gadsden’s Wharf “totally deteriorated” during those years.

Once in Charleston, Africans died in such large numbers from disease, exposure to cold, malnutrition, and physical trauma, Butler said, that local lawmakers passed an ordinance in 1805 establishing fines for anyone caught dumping the bodies of Black people into Charleston Harbor.

A line can be drawn between what transpired at Gadsden’s Wharf more than 200 years ago and health outcomes observed among Black Americans today, historians and health care providers say.

Thaddeus Bell, a North Charleston family physician and founder of the nonprofit Closing the Gap in Health Care, attended the museum’s groundbreaking. When he visited Gadsden’s Wharf, he said, he couldn’t help but think of his Black patients, many of whom suffer disproportionately from cancer, cardiovascular disease, and diabetes.

Research published in JAMA last month found that Black people in the U.S. experienced 1.63 million excess deaths from 1999 to 2020, representing 80 million years of potential life lost, compared with white Americans. African Americans today have higher infant, maternal, and cancer mortality rates, and overall mortality rates, compared with white Americans, according to KFF.

“You think about all of the health issues that Black people did not get the appropriate care for, all of the racist doctors we had to deal with,” Bell said. He said he wished museum leaders had done more to focus on health disparities. “The medical system was just stacked against us. It’s just heartbreaking.”

It’s common for historians who study health disparities to link current health outcomes to the past, said Kevin McQueeney, an assistant professor of history at Nicholls State University in Louisiana and author of “A City Without Care: 300 Years of Racism, Health Disparities, and Health Care Activism in New Orleans.”

McQueeney cited research in his book estimating huge numbers of Africans captured in their homeland died from disease or trauma before ever boarding a slave ship. Up to 20% of those being transported died during the Middle Passage, he said. Then, thousands more men, women, and children who’d survived up to the point of being sold would die within the first 18 months of arriving in America. Those who didn’t die would likely suffer from a variety of health ailments related to respiratory illness, malnutrition, and physical injury for the rest of their lives, he said.

Health disparities have persisted over generations for a variety of reasons, including poverty, racism, and genetics. “In a lot of ways, these are the legacies of slavery,” McQueeney said.

Museum architects designed the building and gardens with this trauma in mind. Small, quiet rooms near the main gallery allow visitors to sit and privately process their grief. A sign in the memorial garden designates the site as a “sacred space” — an acknowledgment that the experience of visiting Gadsden’s Wharf may be difficult, even traumatic, for some people.

“I want people to feel the sorrow, the pain, the burden of the history of the site,” said Walter Hood, a California landscape architect whose studio designed the outdoor space. At the same time, he said, he doesn’t want visitors to consider Gadsden’s Wharf a memorial to the dead.

“It’s almost like Plymouth Rock when you think about it. It’s a place of arrival,” he said. “We are still here.”

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Fields, a Navy veteran and former shipyard worker, was 37 and had four kids at home. The food processing plant where her husband worked had just closed. And Fields’ medical care had left the family thousands of dollars in debt.

It was a challenging time, said Fields, who has become an outspoken advocate for cancer patients in her community. But Fields and her husband, Jermaine, knew they wouldn’t go public with their struggles. “We just looked at each other like, ‘Wait. What?’” Fields recalled. “No. We’re not doing that.”

It was partly pride, she said. But there was another reason, too. “A lot of people have misperceptions and stereotypes that most African American people will beg,” explained Fields, who is Black. “You just don’t want to be looked at as needy.”

Health care debt now burdens an estimated 100 million people in the U.S., according to a KFF Health News-NPR investigation. And Black Americans are 50% more likely than white Americans to go into debt for medical or dental care.

But while people flock to crowdfunding sites like GoFundMe seeking help with their medical debts, asking strangers for money has proven a less appealing option for many patients.

Black Americans use GoFundMe far less than white Americans, studies show. And those who do typically bring in less money.

The result threatens to deepen long-standing racial inequalities.

“Our social media is inundated with stories of campaigns that do super well and that are being shared all over the place,” said Nora Kenworthy, a health care researcher at the University of Washington in Bothell who studies medical crowdfunding. “Those are wonderful stories, and they’re not representative of the typical experience.”

In one recent study, Kenworthy and researchers Shauna Elbers Carlisle and Aaron Davis looked at 827 medical campaigns on GoFundMe that in 2020 had raised more than $100,000. They found only five were for Black women. Of those, two had white organizers.

GoFundMe officials acknowledge that the platform is an imperfect way to finance medical bills and that it reaches only a fraction of people in need. But for years, health care has been the largest category of campaigns on the site. This year alone, GoFundMe has recorded a 20% increase in cancer-related fundraisers, said spokesperson Heidi Hagberg. As Fields learned, some medical providers even encourage their patients to turn to crowdfunding.

The divergent experience of Black patients with this approach to medical debt may reflect the persistent wealth gap separating Black and white Americans, Kenworthy said. “Your friends tend to be the same race as you,” she said. “And so, when you turn to those friends through crowdfunding for assistance, you are essentially tapping into their wealth and their income.”

Nationally, the median white family now has about $184,000 in assets such as homes, savings, and retirement accounts, according to an analysis by the Federal Reserve Bank of St. Louis. The assets of the median Black family total just $23,000.

But there is another reason Black Americans use crowdfunding less, Fields and others said: a sensitivity about being judged for seeking help.

Fields is the daughter of a single mom who worked fast-food jobs while going to school. The family never had much. But Fields said her mother gave her and her brother a strict lesson: getting a hand from family and friends is one thing. Asking strangers is something else.

“In the Black community, a lot of the older generation do not take handouts because you are feeding into the stereotype,” Fields said.

Her mother, whom Fields said never missed paying a bill, refused to seek assistance even after she was diagnosed with late-stage cancer that drove her into debt. She died in 2019.

Confronting the stereotypes can be painful, Fields said. But her mother left her with another lesson. “You can’t control people’s thoughts,” Fields said at a conference in Washington, D.C., organized by the National Coalition for Cancer Survivorship. “But you can control what you do.”

Fields said she was fortunate that she and her husband could rely on a tight network of relatives and friends during her cancer treatment.

“I have a strong family support system. So, one month my mom would take the car payment, and his aunt would do the groceries or whatever we needed. It was always someone in the family that said, ‘OK, we got you.’”

That meant she didn’t have to turn to the local news or to a crowdfunding site like GoFundMe.

UCLA political scientist Martin Gilens said Fields’ sensitivity is understandable. “There’s a sort of a centuries-long suspicion of the poor, a cynicism about the degree of true need,” said Gilens, the author of “Why Americans Hate Welfare.”

Starting in the 1960s, that cynicism was reinforced by the growing view that poverty was a Black problem, even though there are far more white Americans living in poverty, according to census data. “The discourse on poverty shifted in a much more negative direction,” Gilens explained, citing a rise in critical media coverage of Black Americans and poor urban neighborhoods that helped drive a backlash against government assistance programs in the 1980s and ’90s.

Fields, whose cancer is in remission, resolved that she would help others sidestep this stigma.

After finishing treatment, she and her family began delivering groceries, gas cards, and even medical supplies to others undergoing cancer treatment.

Fields is still working to pay off her medical debt. But this spring, she opened what she calls a cancer care boutique in a strip mall outside downtown Suffolk. PinkSlayer, as it’s called, is a nonprofit store that offers wigs, prosthetics, and skin lotions, at discounted prices.

“The one thing my mom always said was, ‘You fight whatever spirit that you don’t want near you,’” Fields said as she cut the ribbon on the store at a ceremony attended by friends and relatives. “We are fighting this cancer thing.”

In one corner of her small boutique, Fields installed a comfortable couch under a mural of pink and red roses. “When someone is in need, they don’t want to be plastered all over your TV, all over Facebook, Instagram,” Fields explained recently after opening the store. “They want to feel loved.”

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A poll commissioned by Public Health Advocates, a Davis-based health policy nonprofit, showed that more than two-thirds of California voters want behavioral health professionals to be part of the emergency response in non-life-threatening situations. Among seven types of situations potentially warranting emergency response, voters think law enforcement agencies are least equipped to respond to calls about mental health crises and people who are unhoused, according to the May 24 poll.

“Police response has become the oversized band-aid for something the band-aid was never designed to cover or heal,” said Ryan McClinton, who manages Public Health Advocates’ First Response Transformation Campaign.

His group and like-minded advocates in California are stepping up a campaign to overhaul the state’s 911 system so more mental health professionals and others with specialized training handle many emergencies, rather than the police.

Law enforcement officials agree that 911 response merits a more nuanced approach. But powerful police unions are against proposals that might reduce their control over 911 operations, and the budget and staff that go with them. Police representatives contacted said they favored alternatives that would supplement the current system rather than supplant it, and that would keep overall responsibility for 911 with police departments.

“Our 911 dispatchers do an amazing job and are the perfect people to handle those in crisis,” said Tim Davis, president of the Sacramento Police Officers Association, a union. “It is imperative that 911 remain under the direction of the police department, as the majority of the calls they receive are for police services.”

McClinton, however, said emergency response systems are outdated and in need of transformation. In many California counties, change is already underway. Forty-one of the state’s 58 counties have some form of mobile crisis services in which mental health workers go out and address crisis needs in the community, according to a survey conducted by the County Behavioral Health Directors Association of California.

Michelle Cabrera, executive director of CBHDA, said that by next year all California counties will have mobile crisis services up and running.

Established in 1968, 911 was designed for reporting fires. However, it quickly became an all-purpose system for routing a much broader set of calls to police.

Californians now make more than 25 million 911 calls annually. Nationally, as many as 15% are for behavioral health emergencies, according to a 2021 study in the journal Psychiatric Services.

Andrea Rivera, a legislative health advocate, said 911 centers today are inundated with calls that aren’t necessarily emergencies — an influx the system wasn’t built to handle.

“911 has become a catchall,” said Rivera, who works for the California Pan-Ethnic Health Network. “While it might be unfair to law enforcement, which doesn’t have the capacity or training, it’s particularly unfair for the community members that don’t feel like they have someone to turn to.”

Alternative approaches vary widely across the state. Santa Clara County, for example, has five mobile response teams that can respond to 911 calls, and can also be deployed by dispatchers at 988, the national Suicide & Crisis Lifeline.

Some teams are made up of clinicians and other trained professionals who can provide peer support. Some respond alongside police, while others arrive wearing plainclothes in a non-police vehicle.

Sandra Hernandez, a division director of Behavioral Health Services in Santa Clara County, said the program is in its infancy but has been effective so far. One surprising takeaway she noted was how much community members appreciated being able to ask for help without emergency vehicles arriving at their doorstep and alerting nosy neighbors to a moment of crisis.

Hernandez recalled one letter her team received from a grateful resident: “My neighbors didn’t even know. They thought I had company.”

Cities in Oregon, New Mexico, and Colorado have similar programs.

Advocates point to cases like that of Jaime Naranjo, a Sacramento County resident who was shot and killed by police last year at his home. Naranjo’s wife, Elisa Naranjo, said her husband was suicidal and had been experiencing delusions and carrying a machete when she called 911 for help.

Sacramento has a Mobile Crisis Support Team, but it’s not 24/7 and Elisa called 911 outside its hours of operation. The Sacramento County Sheriff’s Office said that when police arrived the deputy told Naranjo to drop the weapon, but he did not comply. That, the Sheriff’s Office said, is when Naranjo advanced on the deputy, who shot and killed him.

In California, proposed legislation would make alternative response a statewide requirement. State Sen. Aisha Wahab’s SB 402, which is championed by Public Health Advocates, would require 911 service centers to dispatch professionals other than armed police officers for calls related to mental health or homelessness.

This approach is akin to the role 988 was meant to fill, Wahab said, but low awareness of the 988 number has been a barrier to effectiveness.

Wahab introduced an alternative response program three years ago in Hayward, while on its City Council, and said its success inspired her to draft the legislation. She said the bill, whose fate won’t be decided until next year, is a priority for her but acknowledged it would be complicated to enact changes statewide.

Police union representatives said they supported the idea of alternative response in principle.

“Our members are not mental health professionals,” said Alexa Pratt, the communications director for the Association of Orange County Deputy Sheriffs. “We agree that law enforcement should not be the lead addressing mental health calls but should be there to assist in these programs.”

Tom Saggau, a San Jose Police Officers’ Association spokesperson, referenced a pilot program in San Jose of which police were initially skeptical, until they saw how sharing the burden of emergency call response eased their workload. The program has grown sixfold in eight years.

Saggau, who also represents the Los Angeles Police Protective League, a union, said Los Angeles has drafted a list of 28 types of calls that could be diverted to other initial responders and don’t require a police presence.

Still, police departments are protective of their control over 911 and associated personnel and funding.

Saggau criticized proposals to restructure 911 as outgrowths of the “defund the police” movement and voiced frustration that some advocates think supporting alternative response requires a redistribution of police budgets.

The push to defund the police, which gained international momentum after George Floyd’s murder in 2020, refers to reallocating funding away from police departments to other government agencies that support social services.

“It’s not an either-or,” Saggau said. “You can have a fully staffed, robust police department and you can also have a robust alternative response model.”

Wahab believes it’s critical to ensure all cities and counties have clinicians and other unarmed emergency responders on hand.

“It’s very simple,” Wahab said. “You save lives by having the appropriate response to a crisis.”

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

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

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The grant-funded initiative, administered by the Health Resources and Services Administration, began rolling out four years ago and, so far, has budgeted nearly $32 million to provide access and care for thousands of mothers and babies nationwide — for instance, Hispanic women along the Rio Grande or Indigenous mothers in Minnesota.

KFF Health News found that none of the sites funded by the agency serves mothers in the Southeast, where the U.S. Census Bureau shows the largest concentration of predominantly Black rural communities. That omission exists despite a White House declaration to make Black maternal health a priority and statistics showing America’s maternal mortality rate has risen sharply in recent years. Non-Hispanic Black women — regardless of income or education level — die at nearly three times the rate of non-Hispanic white women.

“There’s a responsibility to respond to the crisis in a way that is more intentional,” said Jamila Taylor, chief executive of the National WIC Association, a nonprofit advocacy group for the federal Special Supplemental Nutrition Program for Women, Infants, and Children.

“Why isn’t HRSA stepping up to the plate, especially with this rural moms’ program?” Taylor said. According to a 2021 analysis of federal data, Black women living in rural areas also are more likely to die or experience more severe health complications during delivery than white women living in rural areas.

Experts say the failure of HRSA’s Rural Maternity and Obstetrics Management Strategies Program, or RMOMS, to reach predominantly Black communities in the rural South reveals structural inequities and underinvestment in a region where health care resources are scarce and have deteriorated.

The steady closure of hospitals in the region and widespread medical staffing shortages have hindered the ability of cash-strapped agencies and care providers to provide more than essential services. Many “don’t have sufficient resources” to apply for the grants, said Peiyin Hung, deputy director of the University of South Carolina’s Rural and Minority Health Research Center. Hung is also a member of the health equity advisory group for the maternal grant program.

“RMOMS really means to invest in the most underserved and the most disadvantaged communities,” she said, but because the program demands applicants have a network of hospitals and other care providers, she said, “the odds are not there for them to even try.”

Hung said she favors basing the awards on need and not solely on the quality of an application.

Where the Help Is Going

The rural program launched in 2019 and has awarded 10 maternal health grants nationwide to bolster telehealth and create networks between hospitals and clinics. Despite the disruption of care due to the covid-19 pandemic, the program’s earliest grant winners helped more than 5,000 women get medical treatment and recorded a decrease in preterm births during the second year of implementation, the agency reported.

When KFF Health News first asked Tom Morris, associate administrator for rural health policy at HRSA, about the lack of grants in the rural South, he said the agency has an “objective review process” and regularly reviews the program to ensure it reaches the people who need it most.

“The rural rates of maternal mortality for African Americans is a real concern,” Morris said, adding, “I think you raised a good point there, and something we can focus on moving forward.”

So far, the maternal grants have gone to health care providers in Arkansas, Maine, Minnesota, New Mexico, South Dakota, Texas, Utah, and West Virginia, as well as two awards in Missouri.

Among the initial 2019 awardees, Texas reports that 91% of people it served were Hispanic; New Mexico reported 59% of recipients were Hispanic; and the Missouri project, which was in the southeastern part of the state known as the Bootheel, said 22% of beneficiaries were Black patients. In all cases, the majority were Medicaid enrollees. No data was available for other grant awardees. (Hispanic people can be of any race or combination of races.)

States across the rural Southeast have not expanded Medicaid coverage to larger numbers of lower-income residents, which often means lower shares of patients have health coverage.

Where Help Is Most Needed

The lack of Medicaid expansion in the region is "all the more reason funding should be going to these areas,” said the WIC association’s Taylor. She said the program’s failure to reach into the southeastern U.S. seems “incredibly odd.”

“The South is a hotbed — to be quite honest — of a whole host of chronic diseases and health challenges, particularly for people of color,” Taylor said.

Taylor, who previously worked on similar programs with community-based organizations while at the Century Foundation, said grant applications are often long and tedious and require intense data collection, adding to the “real challenges and barriers in the process of applying for the grants in the first place.”

Rep. Robin Kelly (D-Ill.), whose district spans rural and urban areas, said it is her experience that “some of the neediest places don’t apply for the grants because they don’t have the personnel.”

“There needs to be special outreach,” said Kelly, who created legislation in 2018 to extend postpartum care after hearing from a constituent. “We need to take the extra steps that mean saving women’s lives.”

Several current grant winners said the federal agency does provide extensive technical assistance and is responsive to questions and concerns — but they also described how difficult it was to win the grants, which amounted to $1 million or less for last year’s winners.

“It’s an intimidating grant to apply for,” said Johnna Nynas, an obstetrician and gynecologist who wrote the maternal grant application for Sanford Bemidji Medical Center in Minnesota.

“I don’t want to admit how much of my own personal time I dedicated to this grant, writing it,” she said. Sanford won the grant in 2021.

Unlike applicants from smaller, cash-strapped health organizations, Nynas was able to solicit help from the internal grant team at Sanford Health, which operates a regional system including a health plan as well as hospitals, clinics, and other facilities in the Dakotas, Iowa, and Minnesota.

Nynas said four hospitals in the remote region of northern Minnesota, where Bemidji is located, have closed their labor and delivery units in recent years, leaving residents — including a significant number of Indigenous women — to drive 60 miles or more one way for care.

Meeting an application requirement to create a network that includes specific health clinics as partners in the grant was “the biggest challenge,” Nynas said, adding “when you look at the map, those can be very difficult to find.”

Try, Try Again

In South Dakota, Avera Health’s application stalled for two years because of grant criteria requiring state Medicaid agencies to sign on as network partners, said Kimberlee McKay, an OB-GYN and the program director for the South Dakota grant. Avera Health spans Iowa, Minnesota, Nebraska, North Dakota, and South Dakota.

It wasn’t until the third round, McKay said, and after “the climate around maternal health had changed,” when the state Medicaid agency committed to fully partnering on the maternity care grant.

South Dakota voters adopted Medicaid expansion in late 2022 and will implement it this summer. Avera’s South Dakota program will use grant money to reach more than 10,000 pregnant patients in the eastern part of the state and the region’s tribal communities.

Among the previous grant winners, only the Texas winner is from a non-Medicaid expansion state. HRSA spokesperson Elana Ross said 10 of 38 applications won grants since 2019. She declined to release a list of unsuccessful applicants, citing privacy concerns.

Ross said the requirement to partner with Medicaid “increases the likelihood that the pool of applicants, if selected, will be able to sustain services at the end of federal funding.” Medicaid, she noted, pays for nearly half of all births nationally and a greater share of births in rural areas.

The goal for the grants is that applicants can keep the program operating even after several years of federal funding runs out, HRSA officials said.

Stoking Change

In May, after KFF Health News began reporting this article, the agency released a new call for applicants and relaxed requirements. Only two awards will be given, and the applications, which demand detailed network plans, are due July 7.

In an emailed statement released after announcing the more flexible expectations, Morris said the federal agency’s mission was to provide care for “the highest-need communities, and that means dedicating significant funds towards addressing the Black maternal health crisis.” The agency will no longer require state Medicaid programs to be partners on initial applications. It also loosened language about which clinics needed to be in the network.

And in perhaps the most significant shift, the agency said it will use newly created criteria to determine “areas of greatest need.” Alabama, Louisiana, and Mississippi all qualify as areas with shortages of maternity health care providers, according to the funding notice.

Kelly, who works on Congress’ bipartisan maternity care caucus, said of the lack of grants in the rural South: “Money matters, resources matter.”

Despite the government-wide focus on maternal care, it wasn’t clear whether the rural program would award new grants in 2023. In April, Morris told KFF Health News the agency was “trying to figure out if we have enough funding to support our existing grantees and do a new competition.”

The rural maternity program’s initial fiscal year 2023 budget was $8 million — down from $10.4 million the year before, according to the agency’s operating plan. The release of grants in May came after the federal agency found an additional $2.4 million in its internal budget.

Even so, Kelly said, she “would love to see more money being put toward it” as well as evaluations of “where the money is being spent and where the holes are.”

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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