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Need to Get Plan B or an HIV Test Online? Facebook May Know About It

Looking for an at-home HIV test on CVS’ website is not as private an experience as one might think. An investigation by The Markup and KFF Health News found trackers on CVS.com telling some of the biggest social media and advertising platforms the products customers viewed.

And CVS is not the only pharmacy sharing this kind of sensitive data.

We found trackers collecting browsing- and purchase-related data on websites of 12 of the U.S.’ biggest drugstores, including grocery store chains with pharmacies, and sharing the sensitive information with companies like Meta (formerly Facebook); Google, through its advertising and analytics products; and Microsoft, through its search engine, Bing.

The tracking tools, popularly called “pixels,” collect information while a website runs. That information is often sent to social media firms and used to target ads, either to you personally or to groups of people that resemble you in demographics or habits. In previous investigations, The Markup found pixels transmitting information from the Department of Education, prominent hospitals, telehealth startups, and major tax preparation companies.

Pharmacy retailer websites’ pixels send a shopper’s IP address — a sort of mailing address for a person’s computer or household internet — to social media giants and other firms. They also send cookies, a way of storing information in a user’s browser that in this case helps track a user from page to page as the user browses a retailer’s site. Cookies can sometimes also associate individuals on a site with their account on a social media platform. In addition to the IP address and cookies, the pixels often send information about what you’ve clicked or bought, including sensitive items, such as HIV tests.

“HIV testing is the gateway to HIV prevention and treatment services,” said Oni Blackstock, the founder of Health Justice and a former assistant commissioner for the New York City Bureau of HIV/AIDS Prevention and Control, in an interview.

“People living with HIV should have control over whether someone knows their status,” she said.

Many retailers shared other detailed interaction data with advertising platforms as well. Ten of the retailers we examined alerted at least one tech platform when shoppers clicked “add to cart” as they shopped for retail goods, a capacious category that included sensitive products like prenatal vitamins, pregnancy tests, and Plan B emergency contraception.

Supermarket giant Kroger, for instance, informed Meta, Bing, Twitter, Snapchat, and Pinterest when a shopper added Plan B to the cart, and informed Google and Nextdoor, a social media platform on which people from the same neighborhood gather in forums, that a shopper had visited the page for the item. Walmart informed Google’s advertising service when a shopper browsed the page of an HIV test, and Pinterest when that shopper added it to the cart.

A previous investigation from The Markup found that Kroger used loyalty cards to track, analyze, and sell an array of data about customers to advertisers.

Using Chrome DevTools, a tool built into Google’s Chrome browser, The Markup and KFF Health News visited the websites of 12 of the U.S.’ biggest drugstores and examined their network traffic. This monitoring tool allowed us to see what information about shopping habits and, in some cases, prescriptions, were sent to third parties.

Over the course of the investigation, retailers frequently changed their trackers — sometimes activating them, sometimes removing them. Some retailers appeared to be taking steps to limit tracking on sensitive items.

For example, Walgreens’ website prevented some trackers from activating on the pages of some products, which included Plan B and HIV tests. This code didn’t prevent all tracking, though: Walgreens’ site continued sending Pinterest information about those sensitive items a user added to the cart.

Walgreens shared a new policy after learning of The Markup and KFF Health News’ findings. Spokesperson Fraser Engerman said that while the chain already had a “robust privacy program,” it would no longer share browsing data related to reproductive health and HIV testing. Engerman also told us that “Pinterest confirmed that the data will be deleted and that it has not been used for advertising purposes.” Crystal Espinosa, a spokesperson for Pinterest, said the company “can confirm that we will be deleting the data Walgreens requested.”

The Pharmacy vs. the Pharmacy Aisle

In the U.S., drugstores and grocery stores with associated pharmacies are only partially covered by the Health Insurance Portability and Accountability Act, or HIPAA. The prescriptions picked up from the pharmacy counter do have this protection.

But in a separate section, sometimes confusingly called the pharmacy aisle, stores also often sell over-the-counter medications, tests, and other health-related products. Consumers might think such purchases have similar protections to their prescriptions, but HIPAA only covers the pharmacy counter’s clinical operations, such as dispensing prescriptions and answering patients’ questions about medication.

This distinction can be confusing enough inside the brick-and-mortar location of a retailer. But the line can become even harder to make out on a website, which lacks the clarifying delineations of physical space.

What’s more, descriptions about what will happen with retail data are generally in retailers' privacy policies, which can usually be found in a link at the bottom of their webpages. The Markup and KFF Health News found them murky at best, and none of them were specific about the parts of the site that were covered by HIPAA and the parts that weren’t.

In the “Privacy Notice for California Residents” part of its privacy policy, Kroger says it processes “personal information collected and analyzed concerning a consumer’s health.” But, the policy continues, the company does not “sell or share” that information. Other information is sold: According to the policy, in the last 12 months, the company sold or shared “protected classification characteristics” to outside entities like data brokers.

Kroger spokesperson Erin Rolfes said the company strives to be transparent and that, “in many cases, we have provided more information to our customers in our privacy notices than our peers.”

Brokering of general retail data is widespread. Our investigation found, though, that some websites shared sensitive clinical data with third parties even when that information would be protected at a HIPAA-covered pharmacy counter. Users attempting to schedule a vaccine appointment at Rite Aid, for example, must answer a survey first to gauge eligibility.

This investigation found that Rite Aid has sent Facebook responses to questions such as:

Do you have a neurological disorder such as seizures or other disorders that affect the brain or have had a disorder that resulted from a vaccine?
Do you have cancer, leukemia, AIDS, or any other immune system problem?
Are you pregnant or could you become pregnant in the next three months?

The Markup and KFF Health News documented Rite Aid sharing this data with Facebook in December 2022. In February of this year, a proposed class-action lawsuit based on similar findings was filed against the drugstore chain in California, alleging code on Rite Aid’s website sent Facebook the time of an appointment and an identifier for the appointment location, demographic information, and answers to questions about vaccination history and health conditions. Rite Aid has moved to dismiss the suit.

After the lawsuit was filed, The Markup and KFF Health News tested Rite Aid’s website again, and it was no longer sending answers to vaccination questions to Facebook.

Rite Aid isn’t the only company that sent answers to eligibility questionnaires to social media firms. Supermarkets Albertsons, Acme, and Safeway, which are owned by the same parent company, also sent answers to questions in their vaccination intake form — albeit in a format that requires cross-referencing the questionnaire’s source code to reveal the meaning of the data.

Using the Firefox web browser’s Network Monitor tool, and with the help of a patient with an active prescription at Rite Aid, KFF Health News and The Markup also found Rite Aid sending the names of patients’ specific prescriptions to Facebook. Rite Aid kept sharing prescription names even after the company stopped sharing answers to vaccination questions in response to the proposed class action (which did not mention the sharing of prescription information). Rite Aid did not respond to requests for comment, and as of June 23, the pixel was still present and sending the names of prescriptions to Facebook.

Other companies shared data about medications from other parts of their sites. Customers of Sam’s Club and Costco, for example, can search names of prescriptions on each retailer’s website to find the local pharmacy with the cheapest prices. But the two websites also sent the name of the medication the user searched for, along with the user’s IP address, to social media companies.

Many of the retailers The Markup and KFF Health News looked at did not respond to questions or declined to comment, including Costco and Sam’s Club. Albertsons said the company “continually” evaluates its privacy practices. CVS said it was compliant with “applicable laws.”

Kroger’s Rolfes wrote that the company’s “trackers disclose product information, which is not sensitive health information unless one or more inferences are made. Kroger does not make any inferences linking the product information collected or disclosed by trackers to an individual’s health condition.”

A Huge Regulatory Challenge

Pharmacies are just one facet of a huge health care sector. But the industry as a whole has been roiled by disclosures of tracking pixels picking up sensitive clinical data.

After an investigation by The Markup in June 2022 found widespread use of trackers on hospital websites, regulatory and legal attention has homed in on the practice.

In December, the Department of Health and Human Services’ Office for Civil Rights published guidance advising health providers and insurers how pixel trackers’ use can be consistent with HIPAA. “Regulated entities are not permitted to use tracking technologies in a manner that would result in impermissible disclosures” of protected health information to tracking technology or other third-party vendors, according to the official bulletin. If implemented, the guidance would provide a path for the agency to regulate hospitals and other providers and fine those who don’t follow it. In an interview with an industry publication in late April, the director of the Office for Civil Rights said it would be bringing its first enforcement action for pixel use “hopefully soon.”

Lobbying groups are seeking to confine any regulatory fallout: The American Hospital Association, for example, sent a letter on May 22 to the Office for Civil Rights asking that the agency “suspend or amend” its guidance. The office, it claimed, was seeking to protect too much data.

This year the Federal Trade Commission has pursued action against companies like GoodRx, which offers prescription price comparisons, and BetterHelp, which offers online therapy, for alleged misuse of data from questionnaires and searches. The companies settled with the agency.

Health care providers have disclosed to the federal government the potential leakage of nearly 10 million patients’ data to various advertising partners, according to a review by The Markup and KFF Health News of breach notification letters and the Office for Civil Rights’ online database of breaches. That figure could be a low estimate: A new study in the journal Health Affairs found that, as of 2021, almost 99 percent of hospital websites contained tracking technologies.

One prominent law firm, BakerHostetler, is defending hospitals in 26 legal actions related to the use of tracking technologies, lawyer Paul Karlsgodt, a partner at the firm, said during a webinar this year. “We’ve seen an absolute eruption of cases,” he said.

Abortion- and pregnancy-related data is particularly sensitive and driving regulatory scrutiny. In the same webinar, Lynn Sessions, also with BakerHostetler, said the California attorney general’s office had made specific investigative requests to one of the firm’s clients about whether the client was sharing reproductive health data.

It’s unclear whether big tech companies have much interest in helping secure health data. Sessions said BakerHostetler had been trying to get Google and Meta to sign so-called business associate agreements. These agreements would bring the companies under the HIPAA regulatory umbrella, at least when handling data on behalf of hospital clients. “Both of them, at least at this juncture, have not been accommodating in doing that,” Sessions said. Google Analytics’ help page for HIPAA instructs customers to “refrain from using Google Analytics in any way that may create obligations under HIPAA for Google.”

Meta says it has tools that attempt to prevent the transfer of sensitive information like health data. In a November 2022 letter to Sen. Mark Warner (D-Va.) obtained by KFF Health News and The Markup, Meta wrote that “the filtering mechanism is designed to prevent that data from being ingested into our ads.” What’s more, the letter noted, the social media giant reaches out to companies transferring potentially sensitive data and asks them to “evaluate their implementation.”

“I remain concerned the company is too passive in allowing individual developers to determine what is considered sensitive health data that should remain private,” Warner told The Markup and KFF Health News.

Meta’s claims in its letter to Warner have been repeatedly questioned. In 2020, the company itself acknowledged to New York state regulators that the filtering system was “not yet operating with complete accuracy.”

To test the filtering system, Sven Carlsson and Sascha Granberg, reporters for SR Ekot in Sweden, set up a dummy pharmacy website in Swedish, which sent fake, but plausible, health data to Facebook to see whether the company’s filtering systems worked as stated. “We weren’t warned” by Facebook, Carlsson said in an interview with KFF Health News and The Markup.

Carlsson and Granberg’s work also found European pharmacies engaged in activities similar to what The Markup and KFF Health News have found. The reporters caught a Swedish state-owned pharmacy sending data to Facebook. And a recent investigation with The Guardian found the U.K.-based pharmacy chain LloydsPharmacy was sending sensitive data — including information about symptoms — to TikTok and Facebook.

In response to questions from KFF Health News and The Markup, Meta spokesperson Emil Vazquez said, “Advertisers should not send sensitive information about people through our Business Tools. Doing so is against our policies and we educate advertisers on properly setting up Business Tools to prevent this from occurring. Our system is designed to filter out potentially sensitive data it is able to detect.”

Meta did not respond to questions about whether it considered any of the information KFF Health News and The Markup found retailers sending to be “sensitive information,” whether any was actually filtered by the system, or whether Meta could provide metrics demonstrating the current accuracy of the system.

In response to our inquiries, Twitter sent a poop emoji, while TikTok and Pinterest said they had policies instructing advertisers not to pass on sensitive information. LinkedIn and Nextdoor did not respond.

Google spokesperson Jackie Berté said the company’s policies “prohibit businesses from using sensitive health information to target and serve ads” and that it worked to prevent such information from being used in advertising, using a “combination of algorithmic and human review” to remedy violations of its policy.

KFF Health News and The Markup presented Google with screenshots of its pixel sending the search company our browsing information when we landed on the retailers’ pages where we could purchase an HIV test and prenatal vitamins, and data showing when we added an HIV test to the cart. In response, Berté said the company had “not uncovered any evidence that the businesses in the screenshots are violating our policies.”

KFF Health News uses the Meta Pixel to collect information. The pixel may be used by third-party websites to measure web traffic and performance data and to target ads on social platforms. KFF Health News collects page usage data from news partners that opt to include our pixel tracker when they republish our articles. This data is not shared with third-party sites or social platforms and users' personally identifiable information is not recorded or tracked, per KFF's privacy policy. The Markup does not use a pixel tracker. You can read its full privacy policy here.

This article was co-published with The Markup, a nonprofit newsroom that investigates how powerful institutions are using technology to change our society. Sign up for The Markup's newsletters.

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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Más adolescentes adictos a cigarrillos electrónicos con altas dosis de nicotina

Cuando la Administración de Drogas y Alimentos (FDA) hizo valer por primera vez su autoridad para regular los cigarrillos electrónicos en 2016, muchos asumieron que eliminaría rápidamente los vaporizadores con los sabores favoritos de los adolescentes como gummy bears o Froot Loops.

En cambio, la FDA permitió que todos los cigarrillos electrónicos permanecieran en el mercado mientras sus fabricantes solicitaban la autorización para comercializarlos.

Siete años después, el vapeo se ha disparado hasta convertirse en una industria de $8.2 mil millones, y los fabricantes están inundando el mercado con miles de productos que pueden ser mucho más adictivos, la mayoría vendidos ilegalmente y sin el permiso de la agencia federal.

“La FDA no ha logrado proteger la salud pública”, dijo Eric Lindblom, ex asesor del Centro de Productos de Tabaco de la FDA. “Es una tragedia”.

Sin embargo, la FDA no es la única entidad que ha tolerado la venta de vaporizadores a menores.

Múltiples actores dentro y fuera de Washington simplemente no hicieron nada, ataron las manos de la FDA o se negaron a proporcionarle los recursos necesarios. Los ex presidentes Barack Obama y Donald Trump impidieron que la agencia prohibiera ampliamente los vaporizadores con sabor a caramelo.

Mientras tanto, los vaporizadores de hoy se han vuelto “más grandes, más malos y más baratos” que los modelos más antiguos, dijo Robin Koval, director ejecutivo de Truth Initiative, un grupo de defensa del control del tabaco. La enorme cantidad de nicotina en los cigarrillos electrónicos (hasta un 76% en cinco años) puede volver adictos a los adolescentes en cuestión de días, explicó Koval.

Ahora, los cigarrillos electrónicos en los Estados Unidos contienen concentraciones de nicotina que, en promedio, son más del doble del nivel permitido en Canadá y Europa. El país no establece límites en el contenido de nicotina de ningún producto de tabaco.

“Nunca antes habíamos tenido este nivel de nicotina”, dijo Matthew Myers, presidente de Campaign for Tobacco-Free Kids, que se opone al vapeo entre los jóvenes. “Realmente no conocemos las consecuencias para la salud a largo plazo”.

Elijah Stone tenía 19 años cuando probó su primer cigarrillo electrónico en una fiesta. Era un estudiante de primer año de la universidad, lidiando con depresión y trastorno por déficit de atención e hiperactividad, y “buscando un escape”. Los vendedores nunca le pidieron su identificación.

Stone dijo que se “enganchó al instante”.

“En el momento en que sentí ese zumbido, ¿cómo se suponía que iba a retroceder después de sentir eso?”, se preguntó retóricamente Stone, quien ahora tiene 23 años y vive en Los Ángeles.

La industria de los cigarrillos electrónicos sostiene que las concentraciones más altas de nicotina pueden ayudar a los adultos que fuman mucho a cambiar de cigarrillos combustibles a productos de vapeo, que son relativamente menos dañinos para ellos.

La FDA ha aprobado los cigarrillos electrónicos con sabor a tabaco y alto contenido de nicotina para ese propósito, dijo April Meyers, directora ejecutiva de la Smoke-Free Alternatives Trade Association.

“El objetivo es alejar a la gente de los productos combustibles”, dijo Nicolás Minas Alfaro, director ejecutivo de Puff Bar, una de las marcas más populares entre los menores el año pasado. Sin embargo, Alfaro reconoció: “Estos productos son productos adictivos; eso no se puede ocultar”.

Aunque este tipo de electrónicos no producen alquitrán, contienen sustancias químicas nocivas, como nicotina y formaldehído. El Cirujano General de Estados Unidos ha advertido que vapear presenta riesgos significativos, incluidos daños al corazón, los pulmones y partes del cerebro que controlan la atención y el aprendizaje, así como un mayor riesgo de adicción a otras sustancias.

Más de 2,5 millones de niños y adolescentes usaron cigarrillos electrónicos en 2022, incluido el 14% de los estudiantes de secundaria, según los Centros para el Control y Prevención de Enfermedades (CDC).

En Estados Unidos, la mayoría de los vapeadores adolescentes comienzan a fumar una hora después de despertarse, según una encuesta de usuarios de cigarrillos electrónicos de 16 a 19 años presentada en la Society for Research on Nicotine and Tobacco en marzo.

El potencial de ganancias, y la aplicación errática de las leyes de vapeo, ha llevado a una fiebre del oro. La cantidad de productos de vapeo, medidos por sus códigos de barras, se cuadriplicó en solo un año, pasando de 453 en junio de 2021 a 2,023 en junio de 2022, según una revisión de Truth Initiative de los datos de ventas minoristas del país.

Funcionarios de la FDA dicen estar abrumados por el volumen de aplicaciones para comercializar cigarrillos electrónicos: 26 millones en total.

“No existe una agencia reguladora en el mundo que haya tenido que lidiar con un volumen como este”, dijo Brian King, director del Centro de Productos de Tabaco de la FDA desde julio de 2022.

La agencia ha luchado para frenar a los fabricantes de cigarrillos electrónicos que continúan vendiendo vaporizadores a pesar del rechazo de los productos por parte de la FDA, así como a los fabricantes que nunca se molestaron en solicitar la autorización, y a los falsificadores que esperan ganar la mayor cantidad de dinero posible antes de que los clausuren.

En 2018, grupos de salud pública demandaron a la agencia alegando que la demora en revisar las solicitudes ponía en riesgo a los niños. Aunque un tribunal ordenó a la FDA que terminara el trabajo para septiembre de 2021, la FDA no cumplió con ese plazo. Se estima que 1,2 millones de menores de 21 años comenzaron a vapear durante el año siguiente, según un estudio publicado en mayo en el American Journal of Preventive Medicine.

Recientemente, la FDA anunció que tomó decisiones sobre el 99% de las solicitudes de cigarrillos electrónicos, y señaló que rechazó millones y solo autorizó a 23. Todos los productos autorizados tienen sabores tradicionales de tabaco y se consideraron “apropiados para la protección de la salud pública” porque los productos con ese sabor no son populares entre los niños, pero brindan a los fumadores adultos una alternativa menos peligrosa, dijo King.

La agencia aún tiene que tomar decisiones finales sobre los productos más populares en el mercado. Esas solicitudes son más largas y necesitan una revisión científica más cuidadosa, dijo Mitch Zeller, ex director del Centro de Productos de Tabaco de la FDA y miembro actual de la junta asesora de Qnovia, que está desarrollando productos para dejar de fumar.

La FDA dijo que no completaría la revisión de las solicitudes para fines de junio, como había dicho, pero que necesitaría hasta fin de año.

Antes de que la FDA pueda anunciar nuevas políticas sobre el tabaco, necesita la aprobación del presidente, quien no siempre está de acuerdo con las prioridades de la FDA.

Por ejemplo, en 2016, Obama rechazó la propuesta de los funcionarios de la FDA de prohibir los sabores aptos para niños.

Y en 2020, Trump dio marcha atrás en su propio plan de retirar del mercado la mayoría de los vaporizadores saborizados. En lugar de prohibir todos los sabores de frutas y menta, la administración Trump los prohibió solo en dispositivos “con cartuchos” como Juul. La prohibición de sabores no afectó a los vaporizadores sin cartuchos, como los cigarrillos electrónicos desechables.

El resultado fue predecible, dijo Zeller.

Los adolescentes cambiaron en masa de Juul a marcas que no se vieron afectadas por la prohibición, incluidos los vaporizadores desechables como Puff Bar, a los que se les permitió seguir vendiendo vaporizadores con sabor a caramelo.

Después de recibir su propia carta de advertencia de la FDA el año pasado, Puff Bar ahora vende solo vaporizadores sin nicotina, dijo Alfaro.

Cuando la FDA intenta una acción audaz, los desafíos legales a menudo la obligan a frenar o incluso revertir el curso de acción.

Por ejemplo, la FDA ordenó a Juul que retirara sus productos del mercado en junio de 2022, pero inmediatamente se enfrentó a una demanda.

La Corte de Apelaciones de EE.UU. para el Circuito de DC se puso del lado de Juul y emitió una suspensión temporal de la orden de la FDA. En cuestión de semanas, la FDA anunció que postergaría la ejecución de su orden debido a “problemas científicos exclusivos de la aplicación de JUUL que justifican una revisión adicional”.

Los fabricantes de cigarrillos electrónicos Logic y R.J. Reynolds Vapor Co. demandaron a la FDA después de que la agencia les ordenara dejar de vender vaporizadores de mentol, un sabor popular entre los adolescentes. En ambos casos, las suspensiones impuestas por los tribunales frenaron las órdenes de la FDA pendientes de revisión y los productos mentolados de las empresas permanecen en el mercado.

Luis Pinto, vocero de la empresa matriz Reynolds American, dijo: “Seguimos confiando en la calidad de todas las aplicaciones de Reynolds, y creemos que existe amplia evidencia para que la FDA determine que la comercialización de estos productos es apropiada para la protección de la salud pública”.

Bajo la administración Biden, la FDA ha comenzado a intensificar los esfuerzos para cumplir con las normas. Multó a 12 fabricantes de cigarrillos electrónicos con más de $19,000 cada uno y emitió más de 1,500 cartas de advertencia a los fabricantes. También envió advertencias a 120,000 minoristas por vender productos ilegales o a clientes menores de 21 años, dijo King.

Cinco de las empresas que recibieron cartas de advertencia fabricaban vaporizadores decorados con personajes de dibujos animados, como los Minions, o tenían forma de juguetes, como Nintendo Game Boys o walkie-talkies.

En mayo, la FDA incluyó a Elfbar y otros vaporizadores no autorizados de China en su “lista roja”, lo que permite a sus agentes detener envíos sin inspección en la frontera. El 22 de junio, la agencia anunció que había emitido cartas de advertencia a 189 minoristas adicionales por vender productos de tabaco no autorizados, específicamente productos Elfbar y Esco Bars, y señaló que ambas marcas son cigarrillos electrónicos descartables que vienen en sabores conocidos por atraer a los jóvenes, incluidos chicle y limonada rosa.

En octubre, el Departamento de Justicia presentó por primera vez demandas contra seis fabricantes de cigarrillos electrónicos en nombre de la FDA, buscando “detener la fabricación y venta ilegales de productos de vapeo no autorizados”.

Algunos legisladores dicen que el Departamento de Justicia debería desempeñar un papel más importante en el enjuiciamiento de las empresas que venden cigarrillos electrónicos aptos para niños.

“No se equivoquen: hay más de seis fabricantes de cigarrillos electrónicos que venden sin autorización en el mercado”, dijo el senador Dick Durbin (demócrata de Illinois) en una carta de marzo. Los menores están “vapeando con productos no autorizados que están en los estantes de las tiendas solo porque la FDA aparentemente ha otorgado un pase gratuito a estos cigarrillos electrónicos ilegales”.

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Will the Doctor See You Now? The Health Systems Changing Landscape

Lucia Agajanian, a 25-year-old freelance film producer in Chicago, doesn’t have a specific primary care doctor, preferring the convenience of visiting a local clinic for flu shots or going online for video visits. “You say what you need, and there’s a 15-minute wait time,” she said, explaining how her appointments usually work. “I really liked that.”

But Olga Lucia Torres, a 52-year-old who teaches narrative medicine classes at Columbia University in New York, misses her longtime primary care doctor, who kept tabs for two decades on her conditions, including lupus and rheumatoid arthritis, and made sure she was up to date on vaccines and screening tests. Two years ago, Torres received a letter informing her that he was changing to a “boutique practice” and would charge a retainer fee of $10,000 for her to stay on as a patient.

“I felt really sad and abandoned,” Torres said. “This was my PCP. I was like, ‘Dude, I thought we were in this together!’”

The two women reflect an ongoing reality: The primary care landscape is changing in ways that could shape patients’ access and quality of care now and for decades to come. A solid and enduring relationship with a primary care doctor — who knows a patient’s history and can monitor new problems — has long been regarded as the bedrock of a quality health care system. But investment in primary care in the U.S. lags that of other high-income countries, and America has a smaller share of primary care physicians than most of its European counterparts.

An estimated one-third of all physicians in the U.S. are primary care doctors — who include family medicine physicians, general internists, and pediatricians — according to the Robert Graham Center, a research and analysis organization that studies primary care. Other researchers say the numbers are lower, with the Peterson-KFF Health System Tracker reporting only 12% of U.S. doctors are generalists, compared with 23% in Germany and as many as 45% in the Netherlands.

That means it’s often hard to find a doctor and make an appointment that’s not weeks or months away.

“This is a problem that has been simmering and now beginning to erupt in some communities at a boil. It’s hard to find that front door of the health system,” said Ann Greiner, president and CEO of the Primary Care Collaborative, a nonprofit membership organization.

Today, a smaller percentage of physicians are entering the field than are practicing, suggesting that shortages will worsen over time.

Interest has waned partly because, in the U.S., primary care yields lower salaries than other medical and surgical specialties.

Some doctors now in practice also say they are burned out, facing cumbersome electronic health record systems and limits on appointment times, making it harder to get to know a patient and establish a relationship.

Others are retiring or selling their practices. Hospitals, insurers like Aetna-CVS Health, and other corporate entities like Amazon are on a buying spree, snapping up primary care practices, furthering a move away from the “Marcus Welby, M.D.”-style neighborhood doctor. About 48% of primary care physicians currently work in practices they do not own. Two-thirds of those doctors don’t work for other physicians but are employed by private equity investors or other corporate entities, according to data in the “Primary Care Chartbook,” which is collected and published by the Graham Center.

Patients who seek care at these offices may not be seen by the same doctor at every visit. Indeed, they may not be seen by a doctor at all but by a paraprofessional — a nurse practitioner or a physician assistant, for instance — who works under the doctor’s license. That trend has been accelerated by new state laws — as well as changes in Medicare policy — that loosen the requirements for physician supervisors and billing. And these jobs are expected to be among the decade’s fastest-growing in the health sector.

Overall, demand for primary care is up, spurred partly by record enrollment in Affordable Care Act plans. All those new patients, combined with the low supply of doctors, are contributing to a years-long downward trend in the number of people reporting they have a usual source of care, be it an individual doctor or a specific clinic or practice.

Researchers say that raises questions, including whether people can’t find a primary care doctor, can’t afford one, or simply no longer want an established relationship.

“Is it poor access or problems with the supply of providers? Does it reflect a societal disconnection, a go-it-alone phenomenon?” asked Christopher Koller, president of the Milbank Memorial Fund, a foundation whose nonpartisan analyses focus on state health policy.

For patients, frustrating wait times are one result. A recent survey by a physician staffing firm found it now takes an average of 21 days just to get in to see a doctor of family medicine, defined as a subgroup of primary care, which includes general internists and pediatricians. Those physicians are many patients’ first stop for health care. That runs counter to the trend in other countries, where patients complain of months- or years-long waits for elective procedures like hip replacements but generally experience short waits for primary care visits.

Another complication: All these factors are adding urgency to ongoing concerns about attracting new primary care physicians to the specialty.

When she was in medical school, Natalie A. Cameron said, she specifically chose primary care because she enjoyed forming relationships with patients and because “I’m specifically interested in prevention and women’s health, and you do a lot of that in primary care.” The 33-year-old is currently an instructor of medicine at Northwestern University, where she also sees patients at a primary care practice.

Still, she understands why many of her colleagues chose something else. For some, it’s the pay differential. For others, it’s because of primary care’s reputation for involving “a lot of care and paperwork and coordinating a lot of issues that may not just be medical,” Cameron said.

The million-dollar question, then, is how much does having a usual source of care influence medical outcomes and cost? And for which kinds of patients is having a close relationship with a doctor important? While studies show that many young people value the convenience of visiting urgent care — especially when it takes so long to see a primary care doctor — will their long-term health suffer because of that strategy?

Many patients — particularly the young and generally healthy ones — shrug at the new normal, embracing alternatives that require less waiting. These options are particularly attractive to millennials, who tell focus groups that the convenience of a one-off video call or visit to a big-box store clinic trumps a long-standing relationship with a doctor, especially if they have to wait days, weeks, or longer for a traditional appointment.

“The doctor I have is a family friend, but definitely I would take access and ease over a relationship,” said Matt Degn, 24, who says it can take two to three months to book a routine appointment in Salt Lake City, where he lives.

Patients are increasingly turning to what are dubbed “retail clinics,” such as CVS’ Minute Clinics, which tout “in-person and virtual care 7 days a week.” CVS Health’s more than 1,000 clinics inside stores across the U.S. treated more than 5 million people last year, Creagh Milford, a physician and the company’s senior vice president of retail health, said in a written statement. He cited a recent study by a data products firm showing the use of retail clinics has grown 200% over the past five years.

Health policy experts say increased access to alternatives can be good, but forgoing an ongoing relationship to a regular provider is not, especially as people get older and are more likely to develop chronic conditions or other medical problems.

“There’s a lot of data that show communities with a lot of primary care have better health,” said Koller.

People with a regular primary care doctor or practice are more likely to get preventive care, such as cancer screenings or flu shots, studies show, and are less likely to die if they do suffer a heart attack.

Physicians who see patients regularly are better able to spot patterns of seemingly minor concerns that could add up to a serious health issue.

“What happens when you go to four different providers on four platforms for urinary tract infections because, well, they are just UTIs,” posed Yalda Jabbarpour, a family physician practicing in Washington, D.C., and the director of the Robert Graham Center for Policy Studies. “But actually, you have a large kidney stone that’s causing your UTI or have some sort of immune deficiency like diabetes that’s causing frequent UTIs. But no one tested you.”

Most experts agree that figuring out how to coordinate care amid this changing landscape and make it more accessible without undermining quality — even when different doctors, locations, health systems, and electronic health records are involved — will be as complex as the pressures causing long waits and less interest in today’s primary care market.

And experiences sometimes lead patients to change their minds.

There’s something to be said for establishing a relationship, said Agajanian, in Chicago. She’s rethinking her decision to cobble together care, rather than have a specific primary care doctor or clinic, following an injury at work last year that led to shoulder surgery.

“As I’m getting older, even though I’m still young,” she said, “I have all these problems with my body, and it would be nice to have a consistent person who knows all my problems to talk with.”

KFF Health News’ Colleen DeGuzman contributed to this report.

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New Charleston Museum Nods to Historical Roots of US Health Disparities

CHARLESTON, S.C. — Maude Callen, a Black nurse-midwife, delivered more than 800 infants across the South Carolina Lowcountry starting in the 1920s, when segregation made it difficult for Black people to get medical care.

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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E-Cigs Are Still Flooding the US Addicting Teens With Higher Nicotine Doses

When the FDA first asserted the authority to regulate e-cigarettes in 2016, many people assumed the agency would quickly get rid of vapes with flavors like cotton candy, gummy bears, and Froot Loops that appeal to kids.

Instead, the FDA allowed all e-cigarettes already on the market to stay while their manufacturers applied for the OK to market them.

Seven years later, vaping has ballooned into an $8.2 billion industry, and manufacturers are flooding the market with thousands of products — most sold illegally and without FDA permission — that can be far more addictive.

“The FDA has failed to protect public health,” said Eric Lindblom, a former senior adviser to the director of the FDA’s Center for Tobacco Products. “It’s a tragedy.”

Yet the FDA isn’t the only entity that has tolerated the selling of vapes to kids.

Multiple players in and out of Washington have declined to act, tied the agency’s hands, or neglected to provide the FDA with needed resources. Former Presidents Barack Obama and Donald Trump both have prevented the FDA from broadly banning candy-flavored vapes.

Meanwhile, today’s vapes have become “bigger, badder, and cheaper” than older models, said Robin Koval, CEO of the Truth Initiative, a tobacco control advocacy group. The enormous amount of nicotine in e-cigarettes — up 76% over five years — can addict kids in a matter of days, Koval said.

E-cigarettes in the U.S. now contain nicotine concentrations that are, on average, more than twice the level allowed in Canada and Europe. The U.S. sets no limits on the nicotine content of any tobacco product.

“We’ve never delivered this level of nicotine before,” said Matthew Myers, president of the Campaign for Tobacco-Free Kids, which opposes youth vaping. “We really don’t know the long-term health implications.”

Elijah Stone was 19 when he tried his first e-cigarette at a party. He was a college freshman, grappling with depression and attention-deficit/hyperactivity disorder, and “looking for an escape.” Store clerks never asked for his ID.

Stone said he was “hooked instantly.”

“The moment I felt that buzz, how was I supposed to go back after I felt that?” asked Stone, now 23, of Los Angeles.

The e-cigarette industry maintains that higher nicotine concentrations can help adults who smoke heavily switch from combustible cigarettes to vaping products, which are relatively less harmful to them. The FDA has approved high-nicotine, tobacco-flavored e-cigarettes for that purpose, said April Meyers, CEO of the Smoke-Free Alternatives Trade Association.

“The goal is to get people away from combustible products,” said Nicholas Minas Alfaro, CEO of Puff Bar, one of the most popular brands with kids last year. Yet Alfaro acknowledged, “These products are addictive products; there’s no hiding that.”

Although e-cigarettes don’t produce tar, they do contain harmful chemicals, such as nicotine and formaldehyde. The U.S. Surgeon General has warned that vaping poses significant risks: including damage to the heart, lungs, and parts of the brain that control attention and learning, as well as an increased risk of addiction to other substances.

More than 2.5 million kids used e-cigarettes in 2022, including 14% of high school students, according to the Centers for Disease Control and Prevention.

Most U.S. teen vapers begin puffing within an hour of waking up, according to a survey of e-cigarette users ages 16 to 19 presented at the Society for Research on Nicotine and Tobacco in March.

The potential for profits — and lax enforcement of vaping laws — has led to a gold rush. The number of unique vaping products, as measured by their bar codes, quadrupled in just one year, rising from 453 in June 2021 to 2,023 in June 2022, according to a Truth Initiative review of U.S. retail sales data.

FDA officials say they’ve been overwhelmed by the volume of e-cigarette marketing applications — 26 million in all.

“There is no regulatory agency in the world that has had to deal with a volume like that,” said Brian King, who became director of the FDA’s Center for Tobacco Products in July 2022.

The agency has struggled to stop e-cigarette makers who continue selling vapes despite the FDA’s rejection of the products, as well as manufacturers who never bothered to apply for authorization, and counterfeiters hoping to earn as much money as possible before being shut down.

In 2018, public health groups sued the agency, charging that the delay in reviewing applications put kids at risk. Although a court ordered the FDA to finish the job by September 2021, the FDA missed that deadline. An estimated 1.2 million people under the legal age of 21 began vaping over the next year, according to a study published in May in the American Journal of Preventive Medicine.

Recently, the FDA announced it has made decisions on 99% of e-cigarette applications, noting that it had rejected millions and authorized 23. All authorized products have traditional tobacco flavors, and were deemed “appropriate for the protection of public health” because tobacco-flavored products aren’t popular with children but provide adult smokers with a less dangerous alternative, King said.

The agency has yet to make final decisions on the most popular products on the market. Those applications are longer and need more careful scientific review, said Mitch Zeller, former director of the FDA’s Center for Tobacco Products and a current advisory board member for Qnovia, which is developing smoking-cessation products.

The FDA said it would not complete reviewing applications by the end of June, as it previously forecast, but would need until the end of the year.

Before the FDA can announce new tobacco policies, it needs approval from the president — who doesn’t always agree with the FDA’s priorities.

For example, Obama rejected FDA officials’ proposal to ban kid-friendly flavors in 2016.

And in 2020, Trump backpedaled on his own plan to pull most flavored vapes off the market. Instead of banning all fruit and minty flavors, the Trump administration banned them only in “cartridge-based” devices such as Juul. The flavor ban didn’t affect vapes without cartridges, such as disposable e-cigarettes.

The result was predictable, Zeller said.

Teens switched in droves from Juul to brands that weren’t affected by the ban, including disposable vapes such as Puff Bar, which were allowed to continue selling candy-flavored vapes.

After receiving its own warning letter from the FDA last year, Puff Bar now sells only zero-nicotine vapes, Alfaro said.

When the FDA does attempt bold action, legal challenges often force it to halt or even reverse course.

The FDA ordered Juul to remove its products from the market in June 2022, for example, but was immediately hit with a lawsuit. The U.S. Court of Appeals for the D.C. Circuit sided with Juul and issued a temporary stay on the FDA’s order. Within weeks, the FDA announced it would hold off on enforcing its order because of “scientific issues unique to the JUUL application that warrant additional review.”

E-cigarette makers Logic and R.J. Reynolds Vapor Co. both sued the FDA after the agency ordered them to stop selling menthol vapes, a flavor popular with teens. In both cases, court-imposed stays halted the FDA’s orders pending review and the companies’ menthol products remain on the market.

Luis Pinto, a spokesperson for parent company Reynolds American, said, “We remain confident in the quality of all of Reynolds’ applications, and we believe that there is ample evidence for FDA to determine that the marketing of these products is appropriate for the protection of public health.”

Under the Biden administration, the FDA has begun to step up enforcement efforts. It fined 12 e-cigarette manufacturers more than $19,000 each, and has issued more than 1,500 warning letters to manufacturers. The FDA also issued warnings to 120,000 retailers for selling illegal products or selling to customers under 21, King said. Five of the companies that received warning letters made vapes decorated with cartoon characters, such as Minions, or were shaped like toys, including Nintendo Game Boys or walkie-talkies.

In May, the FDA put Elfbar and other unauthorized vapes from China on its “red list,” which allows FDA agents to detain shipments without inspection at the border. On June 22, the FDA announced it has issued warning letters to an additional 189 retailers for selling unauthorized tobacco products, specifically Elfbar and Esco Bars products, noting that both brands are disposable e-cigarettes that come in flavors known to appeal to youth, including bubblegum and pink lemonade.

In October, the Justice Department for the first time filed lawsuits against six e-cigarette manufacturers on behalf of the FDA, seeking “to stop the illegal manufacture and sale of unauthorized vaping products.”

Some lawmakers say the Justice Department should play a larger role in prosecuting companies selling kid-friendly e-cigarettes.

“Make no mistake: There are more than six e-cigarette manufacturers selling without authorization on the market,” Sen. Dick Durbin (D-Ill.) said in a March letter. Children are “vaping with unauthorized products that are on store shelves only because FDA has seemingly granted these illegal e-cigarettes a free pass.”

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Familias huyen de los estados que niegan atención de salud a las personas trans

Hal Dempsey quería “escaparse de Missouri”. Arlo Dennis está “huyendo de Florida”. La familia Tillison “no puede quedarse en Texas”.

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

Missouri, Florida y Texas se encuentran entre al menos 20 estados que han limitado la atención de afirmación de género para jóvenes trans. Los tres estados también están entre aquellos que impiden que Medicaid, el seguro de salud público para personas de bajos ingresos, cubra aspectos clave de estos servicios para pacientes de todas las edades.

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

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

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

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

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

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

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

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

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

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

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

A esto se suman las amenazas cada vez más serias de violencia en su comunidad, sobre todo después del tiroteo masivo del 6 de mayo por parte de un supuesto neonazi. La masacre, que ocurrió en el centro comercial Allen Premium Outlets, en los suburbios de Dallas, a 20 millas de su casa, hizo que la familia decidiera mudarse al estado de Washington.

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

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

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

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

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

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

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

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

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

“Pero no Springfield, Illinois”, bromeó Dempsey.

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

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

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

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

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

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

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Advocates Call for 911 Changes. Police Have Mixed Feelings.

SACRAMENTO, Calif. — A mountain of evidence shows police often fail to respond properly to people experiencing a mental health crisis. It can lead to avoidable deaths and criminalization of mental illness, especially among people of color.

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.

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Whats It Really Like to Be HHS Secretary? Three Whove Done It Spill the Beans

As the nation’s top health official and leader of one of the federal government’s largest departments, the secretary of Health and Human Services makes life-or-death decisions every day that affect millions of Americans.

But not all important work is serious.

One former HHS secretary, Kathleen Sebelius, recalled a highlight of her tenure: recording a public service message with “Sesame Street.” “The Elmo commercial was to teach kids how to sneeze,” she said. “We were trying to spread good health habits.”

The script called for Sebelius to ask her co-star to “bend your elbow and sneeze into your arm.”

“Elmo has no elbow,” the beloved red Muppet replied, veering off script. So, Sebelius said, they swapped roles: “Elmo taught me how to sneeze.”

Her story punctuated a rare, intimate conversation Wednesday with three HHS secretaries, past and present — and across party lines. Secretary Xavier Becerra, the agency’s current leader, joined Sebelius, who worked under then-President Barack Obama from 2009 to 2014, and Alex Azar, who worked under then-President Donald Trump from 2018 to 2021. Their candid discussion took place at Aspen Ideas: Health, part of the Aspen Ideas Festival, about the job each of them held.

The panel discussion, taped in Aspen, Colorado, before a standing room-only crowd, was hosted as a live episode of KFF Health News’ weekly policy news podcast, “What the Health?,” and is now available to stream.

Becerra, Azar, and Sebelius spoke not only about the common bullet point on their resumes, but also about their shared understanding of what it means to lead the agency at a time when health is at the front of American minds — and in the crosshairs of American politics. Becerra and Azar have led HHS during the covid-19 pandemic, and Sebelius was in charge during the implementation of the Affordable Care Act.

They offered frank and at times strikingly similar perspectives on leading a department with more than 80,000 employees; a budget of more than $1.5 trillion; and an agenda most often set by outside events or their boss at 1600 Pennsylvania Ave.

Azar, who described fielding “two to five” daily phone calls from Trump, which could come at nearly any hour, said he started his days huddling with senior staff “to discuss what could hit us in the face today.”

“The White House is not a patient place,” said Becerra, who described losing 11 twin towers’ worth of Americans to covid-19 every day when he took the reins. “They want answers quickly.”

“It truly is life and death at HHS,” Becerra added. “The gravity, it hits you. And it’s nonstop.”

The panel offered some behind-closed-doors takes on today’s top issues, including the bruising fights over skyrocketing drug prices under Trump and ACA contraceptive coverage under Obama.

Deciding which “hills do you die on” was Azar’s top challenge as HHS secretary, he said. “When do you fight and when do you not fight with, say, the White House?” He pointed to his push to eliminate drugmaker rebates paid to health plans and pharmacy benefit managers, which drugmakers and others have criticized for driving up drug costs.

“I left a lot of blood on the field of battle just to try to outlaw pharmaceutical rebates,” he said.

All three secretaries agreed that one of the least understood but most important aspects of the department’s work happens outside the United States, performing what Sebelius called “soft diplomacy.” While many countries are loath to welcome officials from the State Department or the military, “they welcome health professionals,” she said. “They welcome the opportunity to learn.”

Asked what they felt unprepared for when they got the job, Azar — who had worked at HHS previously as general counsel then deputy secretary — replied: “The Trump administration.”

Coming from the administration of former President George W. Bush and later a stint as president of the U.S. division of the drugmaker Eli Lilly, Azar said he was “used to certain processes and ways people interact.” Working in the Trump administration, “it was different.”

The atypical assembly of current and former political appointees also offered a chance for some unusually friendly banter.

Becerra noted that one reason he was familiar with HHS programs was because he had filed numerous lawsuits challenging the agency’s actions when he was attorney general of California.

“Oh, he sued me a lot,” Azar quipped, as the group laughed. “Becerra v. Azar, all over the place.”

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Black Rural Southern Women at Gravest Risk From Pregnancy Miss Out on Maternal Health Aid

As maternal mortality skyrockets in the United States, a federal program created to improve rural maternity care has bypassed Black mothers, who are at the highest risk of complications and death related to pregnancy.

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.”

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