These days, state and federal policymakers are sounding alarms about the need to protect children from the harmful effects of social media platforms such as TikTok, Instagram and YouTube.

In June, Surgeon General Vivek H. Murthy called for warning labels — like the ones on cigarettes and alcohol — on social media platforms to alert users that the platforms can harm children’s mental health. The move would require congressional action.

Separately, the Senate approved the bipartisan Kids Online Safety Act and a companion bill, the Children and Teens’ Online Privacy Protection Act, on July 30. And at least 30 states have pending legislation relating to children and social media — including age bans, parental consent requirements, and new digital and media literacy courses for K-12 students — again with a focus on protecting children’s mental well-being.

Some studies have established only an association between social media use and mental health outcomes. But there are no scientific studies yet that establish a causal relationship between social media use and anxiety, depression or other adverse mental health effects, says the National Academies of Sciences, Engineering and Medicine and others.

The emphasis on harm risks overlooking social media’s potential benefits, said Linda Charmaraman, a research scientist and director of the Youth, Media & Wellbeing Research Lab at Wellesley Centers for Women.

Charmaraman has published studies showing that for some adolescents who do not see themselves represented broadly in society, especially those who are LGBTQ+ or racial or ethnic minorities, social media can help them connect with others.

“If you’re taking away something that could be a lifesaver for somebody by reducing loneliness and isolation, that could be doing more harm than good,” Charmaraman said.

“It would make a much more long-lasting impact if the surgeon general would talk about prevention and knowledge and education rather than, ‘There’s this bad product, and we need to warn you,’” she said.

Some research suggests algorithmically driven content can distort reality and spread misinformation; incessant notifications distract attention and disrupt sleep; and the anonymity that sites offer can embolden cyberbullies. And there is research that associates social media use and anxiety and depression.

But much of social media’s effect can depend on the content children consume, said Jenny Radesky, a pediatrician and co-director of the American Academy of Pediatrics Center of Excellence on Social Media and Youth Mental Health.

Radesky said she favors Murthy’s call for warning labels.

“He’s really just asking families to tap the brakes and ask, ‘Is this what my kids need right now?’” she said.

Like her peers and the National Academies, Radesky believes more research is needed to establish a causal effect between social media use and negative youth mental health, particularly for those children whose moods correlate with their use of the platforms.

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El énfasis que se pone sobre los efectos nocivos de las redes sociales puede hacer que los responsables políticos pasen por alto los beneficios para la salud mental que proporcionan a los adolescentes, afirman investigadores, pediatras y las academias nacionales de Ciencias, Ingeniería y Medicina.

En junio, el cirujano general Vivek Murthy, el médico de más alto rango del país, pidió banners con advertencias en las plataformas de las redes sociales. El 30 de julio, el Senado aprobó la Ley bipartidista de Seguridad Infantil en Internet (Kids Online Safety Act) y la Ley de Protección de la Privacidad Infantil y Adolescente en Internet (Children and Teens’ Online Privacy Protection Act). Y al menos 30 estados tienen legislaciones pendientes relacionadas con los jóvenes y las redes sociales, desde prohibiciones por edad y requisitos de consentimiento de los padres hasta nuevos cursos de alfabetización digital y mediática para alumnos de primaria y secundaria.

La mayoría de las investigaciones sugieren que algunas características de las redes sociales pueden ser perjudiciales: los contenidos manipulados algorítmicamente pueden distorsionar la realidad y difundir información errónea; las incesantes notificaciones distraen la atención y perturban el sueño; y el anonimato que ofrecen los sitios puede ser terreno fértil para ciberacosadores.

Pero también pueden ser útiles para algunos jóvenes, afirmó Linda Charmaraman, investigadora y directora del Laboratorio de Investigación sobre Juventud, Medios de Comunicación y Bienestar del Wellesley Centers for Women.

Según la investigación de Charmaraman, publicada en el Handbook of Adolescent Digital Media Use and Mental Health, las redes sociales pueden reducir el aislamiento de los niños de minorías y los jóvenes LGBTQ+, así como de otros que no se ven ampliamente representados en la sociedad. Las prohibiciones por edad, dijo, podrían afectar de manera desproporciona a estos grupos marginados, que también pasan más tiempo en las plataformas.

“Al principio piensas: ‘Es terrible. Tenemos que sacarlos de ahí'”, explicó. “Pero luego descubres por qué lo hacen, y es porque los ayuda a tener una sensación de afirmación de la identidad cuando les falta algo en la vida real”.

Arianne McCullough, de 17 años, dijo que usa Instagram para conectarse con estudiantes negros como ella en la Universidad de Willamette, donde un 2% de los estudiantes son negros.

“Sé lo aislada que te puedes sentir cuando eres la única persona negra, o de cualquier minoría, en un espacio”, contó McCullough, estudiante de primer año y originaria de Sacramento, California. “Así que tener a alguien a quien pueda enviar un mensaje de texto rápido y decirle: ‘Vamos a pasar el rato’, es importante para mí”.

Después de aproximadamente un mes en Willamette, que está en Salem, Oregon, McCullough creó una red social con otros estudiantes negros. “Estamos todos en un pequeño chat”, dijo. “Hablamos y hacemos planes”.

Las redes sociales no siempre han sido tan útiles para McCullough. Después que las escuelas de California cerraran durante la pandemia, dijo que dejó de competir en fútbol y atletismo. Aumentó de peso y en sus redes sociales se promocionaban constantemente los entrenamientos en casa y las dietas de ayuno.

“Así es como empecé a comparar mi físico con el de los demás”, contó McCullough, señalando que se sentía más irritable, distraída y triste. “Me comparaba con otras personas y con cosas que antes no me hacían sentir acomplejada”.

Cuando su madre intentó quitarle el celular, McCullough respondió con un arrebato emocional. “Era claramente adictivo”, dijo su madre, Rayvn McCullough, de 38 años, de Sacramento.

Arianne aseguró que acabó sintiéndose más feliz y más ella misma cuando empezó a usar menos las redes sociales.

Pero el miedo a perderse algo volvió a abrumar a Arianne. “Echaba de menos ver lo que hacían mis amigos y tener una comunicación fácil y rápida con ellos”.

Durante una década, antes de que la pandemia de covid-19 desencadenara lo que la Academia Americana de Pediatría y otros grupos médicos declararon “una emergencia nacional de salud mental para niños y adolescentes”, había ido aumentando el número de jóvenes que tenía problemas con su salud mental.

Según las encuestas de comportamiento realizadas por los Centros para el Control y  Prevención de Enfermedades (CDC) entre estudiantes de secundaria, cada vez más jóvenes manifestaban sentimientos de desesperanza y tristeza, así como pensamientos y comportamientos suicidas.

Se ha culpado al mayor uso de las redes sociales de “inmersión” —como el devenir de videos en YouTube, Instagram y TikTok— de contribuir a la crisis. Pero un comité de las academias nacionales descubrió que la relación entre las redes sociales y la salud mental de los jóvenes es compleja, con posibles beneficios y perjuicios.

Las pruebas del efecto de las redes sociales en el bienestar infantil siguen siendo limitadas, según informó el comité este año, al tiempo que pedía a los Institutos Nacionales de Salud y a otros grupos de investigación que dieran prioridad a la financiación para estos estudios.

En su informe, la comisión citó la legislación aprobada el año pasado en Utah, que impone límites de edad y tiempo al uso de las redes sociales por parte de los jóvenes, y advertía de que esta política podría ser contraproducente.

“La intención de los legisladores de proteger el tiempo para dormir y hacer las tareas escolares y evitar al menos cierto uso compulsivo podría tener consecuencias imprevistas, como aislar a los jóvenes de sus sistemas de apoyo cuando los necesitan”, según se lee en el informe.

Algunos estados han estudiado políticas que se hacen eco de las recomendaciones de las academias nacionales. Por ejemplo, Virginia y Maryland han aprobado leyes que prohíben a las empresas de redes sociales vender o divulgar datos personales de menores y exigen a las plataformas que tengan configuradas de antemano sus reglas de privacidad.

Otros estados, como Colorado, Georgia y West Virginia, han creado planes de estudios para los alumnos de las escuelas públicas sobre los efectos en la salud mental del uso de las redes sociales, algo que también recomiendan las academias nacionales.

La Ley de Seguridad Infantil en Internet, que se encuentra ahora en la Cámara de Representantes, exigiría el consentimiento paterno para los usuarios menores de 13 años e impondría a las empresas el “deber de diligencia” de proteger a los usuarios menores de 17 frente a daños como la ansiedad, la depresión y el comportamiento suicida. El segundo proyecto, la Ley de Protección de la Privacidad Infantil y Adolescente en Internet, prohibiría a las plataformas dirigir anuncios a menores y recopilar datos personales de los jóvenes.

Fiscales generales de California, Louisiana, Minnesota y decenas de otros estados han presentado demandas en cortes federales y estatales alegando que Meta, la empresa matriz de Instagram y Facebook, engañó al público sobre los peligros de las redes sociales para los jóvenes e ignoró los daños potenciales para su salud mental.

La mayoría de las empresas de redes sociales exigen que los usuarios tengan al menos 13 años, y los sitios suelen incluir funciones de seguridad, como bloquear a los adultos para que no envíen mensajes a los menores y predeterminar la configuración de privacidad de las cuentas de los menores.

A pesar de las políticas existentes, el Departamento de Justicia afirma que algunas empresas de redes sociales no siguen sus propias normas. El 2 de agosto, demandó a la empresa matriz de TikTok por presunta violación de las leyes de privacidad infantil, alegando que la empresa permitía, a sabiendas, el acceso a la plataforma a niños menores de 13 años y recopilaba datos sobre su uso.

Las encuestas muestran que las restricciones de edad y los requisitos de consentimiento paterno cuentan con el apoyo popular entre los adultos.

NetChoice, un grupo de la industria entre cuyos miembros se encuentran Meta y Alphabet, propietaria de Google y YouTube, ha presentado demandas contra al menos ocho estados, tratando de detener o anular las leyes que imponen límites de edad, requisitos de verificación y otras políticas destinadas a proteger a los niños.

Según Jenny Radesky, médica y codirectora del Centro de Excelencia sobre Redes Sociales y Salud Mental Juvenil de la Academia Americana de Pediatría, gran parte del efecto de las redes sociales puede depender del contenido que consumen los niños y de las funciones que les mantienen “enganchados” a una plataforma.

Las prohibiciones por edad, los requisitos de consentimiento paterno y otras propuestas pueden tener buenas intenciones, pero no abordan lo que ella considera “el verdadero mecanismo de daño”: los modelos de negocio que pretenden mantener a los jóvenes publicando, haciendo “scrolling” o deslizando verticalmente el dedo por la pantalla y comprando.

”Hemos creado un sistema que no está bien diseñado para promover la salud mental de los jóvenes”, afirmó Radesky. “Está diseñado para que estas plataformas ganen mucho dinero”.

Chaseedaw Giles, editora de estrategia digital y participación de la audiencia de KFF Health News, colaboró con este informe.

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But the emphasis on fears about social media may cause policymakers to miss the mental health benefits it provides teenagers, say researchers, pediatricians, and the National Academies of Sciences, Engineering, and Medicine.

In June, Surgeon General Vivek Murthy, the nation’s top doctor, called for warning labels on social media platforms. The Senate approved the bipartisan Kids Online Safety Act and a companion bill, the Children and Teens’ Online Privacy Protection Act, on July 30. And at least 30 states have pending legislation relating to children and social media — from age bans and parental consent requirements to new digital and media literacy courses for K-12 students.

Most research suggests that some features of social media can be harmful: Algorithmically driven content can distort reality and spread misinformation; incessant notifications distract attention and disrupt sleep; and the anonymity that sites offer can embolden cyberbullies.

But social media can also be helpful for some young people, said Linda Charmaraman, a research scientist and director of the Youth, Media & Wellbeing Research Lab at Wellesley Centers for Women.

For children of color and LGBTQ+ young people — and others who may not see themselves represented broadly in society — social media can reduce isolation, according to Charmaraman’s research, which was published in the Handbook of Adolescent Digital Media Use and Mental Health. Age bans, she said, could disproportionately affect these marginalized groups, who also spend more time on the platforms.

“You think at first, ‘That’s terrible. We need to get them off it,’” she said. “But when you find out why they’re doing it, it’s because it helps bring them a sense of identity affirmation when there’s something lacking in real life.”

Arianne McCullough, 17, said she uses Instagram to connect with Black students like herself at Willamette University, where about 2% of students are Black.

“I know how isolating it can be feeling like you’re the only Black person, or any minority, in one space,” said McCullough, a freshman from Sacramento, California. “So, having someone I can text real quick and just say, ‘Let’s go hang out,’ is important.”

After about a month at Willamette, which is in Salem, Oregon, McCullough assembled a social network with other Black students. “We’re all in a little group chat,” she said. “We talk and make plans.”

Social media hasn’t always been this useful for McCullough. After California schools closed during the pandemic, McCullough said, she stopped competing in soccer and track. She gained weight, she said, and her social media feed was constantly promoting at-home workouts and fasting diets.

“That’s where the body comparisons came in,” McCullough said, noting that she felt more irritable, distracted, and sad. “I was comparing myself to other people and things that I wasn’t self-conscious of before.”

When her mother tried to take away the smartphone, McCullough responded with an emotional outburst. “It was definitely addictive,” said her mother, Rayvn McCullough, 38, of Sacramento.

Arianne said she eventually felt happier and more like herself once she cut back on her use of social media.

But the fear of missing out eventually crept back in, Arianne said. “I missed seeing what my friends were doing and having easy, fast communication with them.”

For a decade before the covid-19 pandemic triggered what the American Academy of Pediatrics and other medical groups declared “a national emergency in child and adolescent mental health,” greater numbers of young people had been struggling with their mental health.

More young people were reporting feelings of hopelessness and sadness, as well as suicidal thoughts and behavior, according to behavioral surveys of students in grades nine through 12 conducted by the Centers for Disease Control and Prevention.

The greater use of immersive social media — like the never-ending scroll of videos on YouTube, TikTok, and Instagram — has been blamed for contributing to the crisis. But a committee of the national academies found that the relationship between social media and youth mental health is complex, with potential benefits as well as harms. Evidence of social media’s effect on child well-being remains limited, the committee reported this year, while calling on the National Institutes of Health and other research groups to prioritize funding such studies.

In its report, the committee cited legislation in Utah last year that places age and time limits on young people’s use of social media and warned that the policy could backfire.

“The legislators’ intent to protect time for sleep and schoolwork and to prevent at least some compulsive use could just as easily have unintended consequences, perhaps isolating young people from their support systems when they need them,” the report said.

Some states have considered policies that echo the national academies’ recommendations. For instance, Virginia and Maryland have adopted legislation that prohibits social media companies from selling or disclosing children’s personal data and requires platforms to default to privacy settings. Other states, including Colorado, Georgia, and West Virginia, have created curricula about the mental health effects of using social media for students in public schools, which the national academies also recommended.

The Kids Online Safety Act, which is now before the House of Representatives, would require parental consent for social media users younger than 13 and impose on companies a “duty of care” to protect users younger than 17 from harm, including anxiety, depression, and suicidal behavior. The second bill, the Children and Teens’ Online Privacy Protection Act, would ban platforms from targeting ads toward minors and collecting personal data on young people.

Attorneys general in California, Louisiana, Minnesota, and dozens of other states have filed lawsuits in federal and state courts alleging that Meta, the parent company of Facebook and Instagram, misled the public about the dangers of social media for young people and ignored the potential damage to their mental health.

Most social media companies require users to be at least 13, and the sites often include safety features, like blocking adults from messaging minors and defaulting minors’ accounts to privacy settings.

Despite existing policies, the Department of Justice says some social media companies don’t follow their own rules. On Aug. 2, it sued the parent company of TikTok for allegedly violating child privacy laws, saying the company knowingly let children younger than 13 on the platform, and collected data on their use.

Surveys show that age restrictions and parental consent requirements have popular support among adults.

NetChoice, an industry group whose members include Meta and Alphabet, which owns Google and YouTube, has filed lawsuits against at least eight states, seeking to stop or overturn laws that impose age limits, verification requirements, and other policies aimed at protecting children.

Much of social media’s effect can depend on the content children consume and the features that keep them engaged with a platform, said Jenny Radesky, a physician and a co-director of the American Academy of Pediatrics’ Center of Excellence on Social Media and Youth Mental Health.

Age bans, parental consent requirements, and other proposals may be well-meaning, she said, but they do not address what she considers to be “the real mechanism of harm”: business models that aim to keep young people posting, scrolling, and purchasing.

“We’ve kind of created this system that’s not well designed to promote youth mental health,” Radesky said. “It’s designed to make lots of money for these platforms.”

Chaseedaw Giles, KFF Health News’ digital strategy & audience engagement editor, contributed to this report.

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But their plans to expand coverage illustrate key ideological differences on the government’s role in subsidizing health insurance for kids: what to charge low-income families as premiums for public coverage — and what happens if they miss a payment.

“It’s a tale of two states,” said Joan Alker, executive director of Georgetown University’s Center for Children and Families.

That divergence represents more than just two states taking their own path. It showcases a broader breakthrough moment, Alker said, as the nation rethinks how government works for families following the covid-19 pandemic.  The divide also underscores the policies at stake in the 2024 presidential election.

Republican-led legislatures in Florida and Arizona worked across party lines in 2023 to pass bills to expand their states’ Children’s Health Insurance Program — widely known as CHIP — which covers anyone younger than 19 in families earning too much to be eligible for Medicaid.

Florida Republican Gov. Ron DeSantis and Arizona Democratic Gov. Katie Hobbs then signed bills into law last year that increased the amount of money a family can make and still be eligible for their states’ CHIP programs. That’s where the similarities end.

Arizona began to enroll newly eligible children in March. That state has adopted policies that align with the Biden administration’s efforts to apply Affordable Care Act-style protections to CHIP, such as eliminating annual and lifetime limits on coverage and lockouts if families don’t pay premiums.

Arizona’s CHIP plan, called KidsCare, suspended its monthly premiums in 2020 and has yet to reinstate them. State officials are considering whether it’s worth the expense to manage and collect the payments given that new federal rules forbid the state from disenrolling children for nonpayment, said Marcus Johnson, a deputy director for the state’s Medicaid agency.

“We’re trying to understand if the juice is worth the squeeze,” he said.

By contrast, Florida has yet to begin its expanded enrollment and is the only state to file a federal lawsuit challenging a Biden administration rule requiring states to keep kids enrolled for 12 months even if their families don’t pay their premiums.

A judge dismissed Florida’s lawsuit on May 31, saying the state could appeal to federal regulators. The state’s CHIP expansion now awaits federal regulatory approval before newly eligible children can be enrolled.

“No eligible child should face barriers to enrolling in CHIP or be at risk of losing the coverage they rely on,” said Sara Lonardo, a spokesperson for the federal Department of Health and Human Services.

Florida’s CHIP expansion calls for significantly raising premiums and then boosting them by 3% annually. The state estimates expansion will cost an additional $90 million in its first full year and expects to collect about $23 million in new premiums to help fund the expansion of what it calls Florida KidCare.

But Florida officials have said that complying with a provision that bars children from being disenrolled for unpaid premiums would cause the state to lose $1 million a month. The state’s 2024 budget allocates $46.5 billion to health care and projects a $14.6 billion surplus.

Florida officials have flouted federal regulations and removed at least 22,000 children from CHIP for unpaid premiums since the rule banning such disenrollments took effect on Jan. 1, according to public records obtained by the Florida Health Justice Project, a nonprofit advocacy group.

DeSantis’ office and Florida’s Medicaid administration did not respond to KFF Health News’ repeated requests for comment about CHIP. But in legal filings, Florida said its CHIP plan is a “personal responsibility program.” It is “a bridge from Medicaid to private insurance,” the administration said on social media, to get families used to premiums, cost sharing, and the risk of losing coverage when missing a payment.

For some Floridians, like Emily Dent in Cape Coral, the higher premiums proposed in the state’s expansion plan would create a financial burden, not open a path to self-sufficiency.

Dent, 32, said her 8-year-old son, James, was disenrolled from Medicaid in April because the family’s income was too high. Although James would qualify for CHIP under Florida’s proposed expansion, Dent said the $195 monthly premium would be a financial struggle for her family.

Leaving James uninsured is not an option, Dent said. He is severely disabled due to a rare genetic disorder, Pallister-Killian syndrome, and requires round-the-clock nursing.

“He has to have health insurance,” she said. “But it’s going to drain my savings, which was going to be for a house one day.”

Research shows the cost of premiums can block many families from obtaining and maintaining CHIP coverage even when premiums are low.

And premiums don’t offset much of a state’s costs to operate the program, said Matt Jewett, director of health policy for the Children’s Action Alliance of Arizona, a nonprofit that promotes health insurance coverage for kids in the Grand Canyon State.

He noted that the federal government pays 70% of Florida’s program costs and 75% of Arizona’s — after deducting all premiums collected.

“Premiums are more about an ideological belief that families need to have skin in the game,” he said, “rather than any practical means of paying money to support the program.”

Republican-leaning states are not alone in implementing monthly or quarterly premiums for CHIP. Twenty-two states, including Democratic-leaning states such as New York and Massachusetts, charge premiums.

States have had wide discretion in how they run CHIP since the program became law in 1997, including the ability to charge such premiums and cut people’s access if they failed to pay. That’s been part of its success, said Jennifer Tolbert, deputy director of the Program on Medicaid and the Uninsured at KFF.

“Especially in more conservative states, the ability to create CHIP as a separate program — independent from Medicaid — enabled and fostered that bipartisan support,” Tolbert said.

But in the decades since CHIP was enacted, government’s role in health insurance has evolved, most significantly after President Barack Obama in 2010 signed the Affordable Care Act, which introduced coverage protections and expanded assistance for low-income Americans.

Former President Donald Trump didn’t prioritize those things while in office, Tolbert said. He has suggested that he is open to cutting federal assistance programs if reelected, while the Biden administration has adopted policies to make it easier for low-income Americans to enroll and keep their health coverage.

Just as for Dent, the question of CHIP premiums in this debate isn’t abstract for Erin Booth, a Florida mom who submitted a public comment to federal regulators about Florida’s proposed CHIP expansion. She said she would have to pay a high premium, plus copayments for doctor visits, to keep her 8-year-old son covered.

“I am faced with the impossible decision of whether to pay my mortgage or to pay for health insurance for my son,” she wrote.

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She received coverage through Florida’s Medicaid program until it abruptly stopped at the end of March, she said.

“Every day the anxiety builds,” said Saa, who lost her home health aide for 11 days, starting April 1, despite being eligible. The state has since restored Saa’s home health aide service, but during the gap she leaned on her mother and her 23- and 15-year-old daughters, while struggling to regain her Medicaid benefits.

“It’s just so much to worry about,” she said. “This is a health care system that’s supposed to help.”

Medicaid’s home and community-based services are designed to help people like Saa, who have disabilities and need help with everyday activities, stay out of a nursing facility. But people are losing benefits with little or no notice, getting bad advice when they call for information, and facing major disruptions in care while they wait for the issue to get sorted out, according to attorneys and advocates who are hearing from patients.

In Colorado, Texas, and Washington, D.C., the National Health Law Program, a nonprofit that advocates for low-income and underserved people, has filed civil rights complaints with two federal agencies alleging discrimination against people with disabilities. The group has not filed a lawsuit in Florida, though its attorneys say they’ve heard of many of the same problems there.

Attorneys nationwide say the special needs of disabled people were not prioritized as states began to review eligibility for Medicaid enrollees after a pandemic-era mandate for coverage expired in March 2023.

“Instead of monitoring and ensuring that people with disabilities could make their way through the process, they sort of treated them like everyone else with Medicaid,” said Elizabeth Edwards, a senior attorney for the National Health Law Program. Federal law puts an “obligation on states to make sure people with disabilities don’t get missed.”

At least 21 million people nationwide have been disenrolled from Medicaid since states began eligibility redeterminations in spring 2023, according to a KFF analysis.

The unwinding, as it’s known, is an immense undertaking, Edwards said, and some states did not take extra steps to set up a special telephone line for those with disabilities, for example, so people could renew their coverage or contact a case manager.

As states prepared for the unwinding, the Centers for Medicare & Medicaid Services, the federal agency that regulates Medicaid, advised states that they must give people with disabilities the help they need to benefit from the program, including specialized communications for people who are deaf or blind.

The Florida Department of Children and Families, which verifies eligibility for the state’s Medicaid program, has a specialized team that processes applications for home health services, said Mallory McManus, the department’s communications director.

People with disabilities disenrolled from Medicaid services were “properly noticed and either did not respond timely or no longer met financial eligibility requirements,” McManus said, noting that people “would have been contacted by us up to 13 times via phone, mail, email, and text before processing their disenrollment.”

Allison Pellegrin of Ormond Beach, Florida, who lives with her sister Rhea Whitaker, who is blind and cognitively disabled, said that never happened for her family.

“They just cut off the benefits without a call, without a letter or anything stating that the benefits would be terminating,” Pellegrin said. Her sister’s home health aide, whom she had used every day for nearly eight years, stopped service for 12 days. “If I’m getting everything else in the mail,” she said, “it seems weird that after 13 times I wouldn’t have received one of them.”

Pellegrin, 58, a sales manager who gets health insurance through her employer, took time off from work to care for Whitaker, 56, who was disabled by a severe brain injury in 2006.

Medicaid reviews have been complicated, in part, by the fact that eligibility works differently for home health services than for general coverage, based on federal regulations that give states more flexibility to determine financial eligibility. Income limits for home health services are higher, for instance, and assets are counted differently.

In Texas, a parent in a household of three would be limited to earning no more than $344 a month to qualify for Medicaid. And most adults with a disability can qualify without a dependent child and be eligible for Medicaid home health services with an income of up to $2,800 a month.

The state was not taking that into consideration, said Terry Anstee, a supervising attorney for community integration at Disability Rights Texas, a nonprofit advocacy group.

Even a brief lapse in Medicaid home health services can fracture relationships that took years to build.

“It may be very difficult for that person who lost that attendant to find another attendant,” Anstee said, because of workforce shortages for attendants and nurses and high demand.

Nearly all states have a waiting list for home health services. About 700,000 people were on waiting lists in 2023, most of them with intellectual and developmental disabilities, according to KFF data.

Daniel Tsai, a deputy administrator at CMS, said the agency is committed to ensuring that people with disabilities receiving home health services “can renew their Medicaid coverage with as little red tape as possible.”

CMS finalized a rule this year for states to monitor Medicaid home health services. For example, CMS will now track how long it takes for people who need home health care to receive the services and will require states to track how long people are on waitlists.

Staff turnover and vacancies at local Medicaid agencies have contributed to backlogs, according to complaints filed with two federal agencies focused on civil rights.

The District of Columbia’s Medicaid agency requires that case managers help people with disabilities complete renewals. However, a complaint says, case managers are the only ones who can help enrollees complete eligibility reviews and, sometimes, they don’t do their jobs.

Advocates for Medicaid enrollees have also complained to the Federal Trade Commission about faulty eligibility systems developed by Deloitte, a global consulting firm that contracts with about two dozen states to design, implement, or operate automated benefits systems.

KFF Health News found that multiple audits of Colorado’s eligibility system, managed by Deloitte, uncovered errors in notices sent to enrollees. A 2023 review by the Colorado Office of the State Auditor found that 90% of sampled notices contained problems, some of which violate the state’s Medicaid rules. The audit blamed “flaws in system design” for populating notices with incorrect dates.

Deloitte declined to comment on specific state issues.

In March, Colorado officials paused disenrollment for people on Medicaid who received home health services, which includes people with disabilities, after a “system update” led to wrongful terminations in February.

Another common problem is people being told to reapply, which immediately cuts off their benefits, instead of appealing the cancellation, which would ensure their coverage while the claim is investigated, said attorney Miriam Harmatz, founder of the Florida Health Justice Project.

“What they’re being advised to do is not appropriate. The best way to protect their legal rights,” Harmatz said, “is to file an appeal.”

But some disabled people are worried about having to repay the cost of their care.

Saa, who lives in Davie, Florida, received a letter shortly before her benefits were cut that said she “may be responsible to repay any benefits” if she lost her appeal.

The state should presume such people are still eligible and preserve their coverage, Harmatz said, because income and assets for most beneficiaries are not going to increase significantly and their conditions are not likely to improve.

The Florida Department of Children and Families would not say how many people with disabilities had lost Medicaid home health services.

But in Miami-Dade, Florida’s most populous county, the Alliance for Aging, a nonprofit that helps older and disabled people apply for Medicaid, saw requests for help jump from 58 in March to 146 in April, said Lisa Mele, the organization’s director of its Aging and Disability Resources Center.

“So many people are calling us,” she said.

States are not tracking the numbers, so “the impact is not clear,” Edwards said. “It’s a really complicated struggle.”

Saa filed an appeal March 29 after learning from her social worker that her benefits would expire at the end of the month. She went to the agency but couldn’t stand in a line that was 100 people deep. Calls to the state’s Medicaid eligibility review agency were fruitless, she said.

“When they finally connected me to a customer service representative, she was literally just reading the same explanation letter that I’ve read,” Saa said. “I did everything in my power.”

Saa canceled her home health aide. She lives on limited Social Security disability income and said she could not afford to pay for the care.

On April 10, she received a letter from the state saying her Medicaid had been reinstated, but she later learned that her plan did not cover home health care.

The following day, Saa said, advocates put her in touch with a point person at Florida’s Medicaid agency who restored her benefits. A home health aide showed up April 12. Saa said she’s thankful but feels anxious about the future.

“The toughest part of that period is knowing that that can happen at any time,” she said, “and not because of anything I did wrong.”

Have you or someone you know with disabilities unexpectedly lost Medicaid benefits since April 2023? Tell KFF Health News about it here.

KFF Health News correspondents Samantha Liss and Rachana Pradhan 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 recall comes years after surgeons say they first noticed problems with the HeartMate II and HeartMate 3, manufactured by Thoratec Corp., a subsidiary of Abbott Laboratories. The devices are not currently being removed from the market. In an emailed response, Abbott said it had communicated the risk to customers this year.

The delayed action raises questions for some safety advocates about how and when issues with approved medical devices should be reported. The heart devices in question have been associated with thousands of reports of patients’ injuries and deaths, as described in a KFF Health News investigation late last year.

“Why doesn’t the public know?” said Sanket Dhruva, a cardiologist and an expert in medical device safety and regulation at the University of California-San Francisco. Though some surgeons may have been aware of issues, others, particularly those who do not implant the device frequently, may have been in the dark. “And their patients are suffering adverse events,” he said.

The recall involves a pair of mechanical pumps that help the heart pump blood when it can’t do so on its own. The devices, small enough to fit in the palm of a hand, are implanted in patients with end-stage heart failure who are waiting for a transplant or as a permanent solution when a transplant is not an option. The recall affects nearly 14,000 devices.

Amanda Hils, an FDA press officer, said the agency is working with Abbott to investigate the reported injuries and deaths and determine if further action is needed.

“To date, the number of deaths reported appears consistent with the adverse events observed in the initial clinical trial,” Hils said in an email.

According to the FDA’s recall notice, the devices can cause buildup of “biological material” that reduces their ability to help the heart circulate blood and keep patients alive. The buildup accumulates gradually and can appear two years or more after a device is implanted in a patient’s chest.

Doctors were advised to watch out for “low-flow alarms” on the devices and, if they do diagnose the obstruction, to either monitor the patient or perform surgery to implant a stent, release the blockage, or replace the pump. “Rates of outflow obstruction are low,” Abbott spokesperson Justin Paquette said in an email, adding that patients whose devices are functioning normally “have no reason for concern.”

A review of the FDA device database shows at least 130 reports related to HeartMate II or 3 that mention the complication reported by regulators. The earliest such report filed with the FDA dates to at least 2020, according to a KFF Health News review of the database.

Monday’s alert is the second Class 1 recall of a HeartMate device this year.

In January, Abbott issued an urgent “correction letter” to hospitals about a separate issue in which the HeartMate 3 unintentionally starts and stops due to the pump’s communication system, which cardiologists use to assess patients’ status. The FDA alerted the public in March.

In February, Abbott issued another urgent letter to hospitals about the blockage problem, asking them to inform physicians, complete and return an acknowledgment form, and pay attention to low-flow alarms on the device’s monitor that may indicate an obstruction. The company said in the letter that it is working on “a design solution” to prevent the blockages.

A study published in 2022 in the Journal of Thoracic and Cardiovascular Surgery reported the obstruction in about 3% of cases, though the incidence rate was higher the longer a patient had the device.

The only other Class 1 recall issued for the HeartMate 3 was in May 2018, when the company issued corrective action notices to hospitals and physicians warning that the graft line that carries blood from the pump to the aorta could twist and stop blood flow.

The FDA recall notice issued Monday includes additional guidance for physicians to diagnose the blockage using an algorithm to detect obstructions and, if needed, a CT angiogram to verify the cause.

At present, the HeartMate 3, which was first approved by the FDA in 2017, is the only medical option for many patients with end-stage heart failure and who do not qualify for a transplant. The HeartMate 3 has supplanted the HeartMate II, which received FDA approval in 2008.

If the new recall leads to the device being removed from the market, end-stage heart failure patients could have no options, said Francis Pagani, a cardiothoracic surgeon at the University of Michigan who also oversees a proprietary database of HeartMate II and HeartMate 3 implants.

If that happens, “we are in trouble,” Pagani said. “It would be devastating to the patients to not have this option. It’s not a perfect option — no pump ever is — but this is as good as it’s ever been.”

It’s not known precisely how many patients have received a HeartMate II or HeartMate 3 implant. That information is proprietary. The FDA recall notices show worldwide distribution of more than 22,000 HeartMate 3 devices and more than 2,200 of the HeartMate II.

The blockage complication may have gone unreported to the public for so long partly because physicians are not required to report adverse events to federal regulators, said Madris Kinard, a former FDA medical device official and founder of Device Events, a company that makes FDA device data more user-friendly for hospitals, law firms, and investors.

Only device manufacturers, device importers, and hospitals are required by law to report device-related injuries, deaths, and significant malfunctions to the FDA.

“If this is something physicians were aware of, but they weren’t mandated to report to the FDA,” Kinard said, “at what point does that communication between those two groups need to happen?”

Dhruva, the cardiologist, said he is looking for transparency from Abbott about what the company is doing to address the problem so he can have more thorough conversations with patients considering a HeartMate device.

“We’re going to expect to have some data saying, ‘Hey we created this fix, and this fix works, and it doesn’t cause a new problem.’ That’s what I want to know,” he said. “There’s just a ton more that I feel in the dark about, to be honest, and I’m sure that patients and their families do as well.”

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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“No woman today should fear [not having] access to the care that she needs. President Biden has made that clear,” Becerra said last Tuesday in Fort Lauderdale, Fla.

It was a timely visit. The day before, the state’s Supreme Court greenlit an abortion rights ballot measure that Democrats hope will drive turnout in November, while also upholding the six-week abortion ban signed into law by Gov. Ron DeSantis (R) last year. The ban takes effect May 1.

Becerra called the law “medical apartheid” in remarks following a field hearing House Democrats held in Fort Lauderdale on reproductive health care. The Democrats sought to highlight the GOP’s role in abortion bans that most Americans oppose.  

He drew a line connecting the Supreme Court’s 2022 decision overturning Roe v. Wade to recent state efforts to restrict fertility treatment and access to contraception.

“At the end of the day, Roe was about all of us and our care,” he said. “It was not simply about abortion.”

It wasn’t the first time this year that the secretary has arrived somewhere at an opportune moment. He traveled to Alabama in February in the wake of that state’s Supreme Court ruling declaring that embryos created through in vitro fertilization are children. He held a roundtable with IVF patients and framed the court’s decision as an assault on reproductive freedom. 

The week before he visited Florida, Becerra was in South Carolina, one of 14 states with severe abortion restrictions and among those with the highest maternal mortality rates.

Two days later, Becerra appeared in Michigan, one of the most competitive states in the upcoming presidential election, where he boasted about the Biden administration’s efforts to lower prescription drug prices and joined Gov. Gretchen Whitmer (D) for another roundtable on reproductive rights.

Becerra, a former California attorney general and House member, is a fluent Spanish speaker whose travels include a “National Latino Health Tour” — a key demographic for Biden’s reelection hopes. Becerra’s remarks often cover other Biden health priorities, including lowering drug prices, increasing mental health access, boosting funding for cancer research, and improving health insurance coverage and health equity.

“From Colorado, I head over to New Mexico,” Becerra said as he left the Florida event. “We’re going to go everywhere we need to go.”

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Since a Feb. 21 cyberattack on a previously obscure medical payment processing company, Change Healthcare, Parsons said, she and her colleagues haven’t been able to electronically bill for their services.

She heard Noridian Healthcare Solutions, California’s Medicare payment processor, was not accepting paper claims as of earlier this week, she said. And paper claims can take 3-6 months to result in payment anyway, she estimated.

“We will be in trouble in very short order, and are very stressed,” she said in an interview with KFF Health News.

A California Medical Association spokesperson said March 7 that the Centers for Medicare & Medicaid Services had agreed in a meeting to encourage payment processors like Noridian to accept paper claims. A Noridian spokesperson referred questions to CMS.

The American Hospital Association calls the suspected ransomware attack on Change Healthcare, a unit of insurance giant UnitedHealth Group’s Optum division, “the most significant and consequential incident of its kind against the U.S. health care system in history.” While doctors’ practices, hospital systems, and pharmacies struggle to find workarounds, the attack is exposing the health system’s broad vulnerability to hackers, as well as shortcomings in the Biden administration’s response.

To date, government has relied on more voluntary standards to protect the health care system’s networks, Beau Woods, a co-founder of the cyber advocacy group I Am The Cavalry, said. But “the purely optional, do-this-out-of-the-goodness-of-your-heart model clearly is not working,” he said. The federal government needs to devote greater funding, and more focus, to the problem, he said.

The crisis will take time to resolve. Comparing the Change attack to others against parts of the health care system, “we have seen it generally takes a minimum of 30 days to restore core systems,” said John Riggi, the hospital association’s national adviser on cybersecurity.

In a March 7 statement, UnitedHealth Group said two services — related to electronic payments and medical claims — would be restored later in the month. “While we work to restore these systems, we strongly recommend our provider and payer clients use the applicable workarounds we have established,” the company said.

“We’re determined to make this right as fast as possible,” said company CEO Andrew Witty.

Providers and patients are meanwhile paying the price. Reports of people paying out-of-pocket to fill vital prescriptions have been common. Independent physician practices are particularly vulnerable.

“How can you pay staff, supplies, malpractice insurance — all this — without revenue?” said Stephen Sisselman, an independent primary care physician on Long Island in New York. “It’s impossible.”

Jackson Health System, in Miami-Dade County, Florida, may miss out on as much as $30 million in payments if the outage lasts a month, said Myriam Torres, its chief revenue officer. Some insurers have offered to mail paper checks.

Relief programs announced by both UnitedHealth and the federal government have been criticized by health providers, especially hospitals. Sisselman said Optum offered his practice, which he said has revenue of hundreds of thousands of dollars a month, a loan of $540 a week. Other providers and hospitals interviewed by KFF Health News said their offers from the insurer were similarly paltry.

In its March 7 statement, the company said it would offer new financing options to providers.

Providers Pressure Government to Act

On March 5, almost two weeks after Change first reported what it initially called a cybersecurity “issue,” the Health and Human Services Department announced several assistance programs for health providers.

One recommendation is for insurers to advance payments for Medicare claims — similar to a program that aided health systems early in the pandemic. But physicians and others are worried that would help only hospitals, not independent practices or providers.

Anders Gilberg, a lobbyist with the Medical Group Management Association, which represents physician practices, posted on X, formerly known as Twitter, that the government “must require its contractors to extend the availability of accelerated payments to physician practices in a similar manner to which they are being offered to hospitals.”

HHS spokesperson Jeff Nesbit said the administration “recognizes the impact” of the attack and is “actively looking at their authority to help support these critical providers at this time and working with states to do the same.” He said Medicare is pressing UnitedHealth Group to “offer better options for interim payments to providers.”

Another idea from the federal government is to encourage providers to switch vendors away from Change. Sisselman said he hoped to start submitting claims through a new vendor within 24 to 48 hours. But it’s not a practicable solution for everyone.

Torres said suggestions from UnitedHealth and regulators that providers change clearinghouses, file paper claims, or expedite payments are not helping.

“It’s highly unrealistic,” she said of the advice. “If you’ve got their claims processing tool, there’s nothing you can do.”

Mary Mayhew, president of the Florida Hospital Association, said her members have built up sophisticated systems reliant on Change Healthcare. Switching processes could take 90 days — during which they’ll be without cash flow, she said. “It’s not like flipping a switch.”

Nesbit acknowledged switching clearinghouses is difficult, “but the first priority should be resuming full claims flow,” he said. Medicare has directed its contractors and advised insurers to ease such changes, he added.

Health care leaders including state Medicaid directors have called on the Biden administration to treat the Change attack similarly to the pandemic — a threat to the health system so severe that it demands extraordinary flexibility on the part of government insurance programs and regulators.

Beyond the money matters — critical as they are — providers and others say they lack basic information about the attack. UnitedHealth Group and the American Hospital Association have held calls and published releases about the incident; nevertheless, many still feel they’re in the dark.

Riggi of the AHA wants more information from UnitedHealth Group. He said it’s reasonable for the conglomerate to keep some information closely held, for example if it’s not verified or to assist law enforcement. But hospitals would like to know how the breach was perpetrated so they can reinforce their own defenses.

“The sector is clamoring for more information, ultimately to protect their own organizations,” he said.

Rumors have proliferated.

“It gets a little rough: Any given day you’re going to have to pick and choose who to believe,” Saad Chaudhry, an executive at Maryland hospital system Luminis Health, told KFF Health News. “Do you believe these thieves? Do you believe the organization itself, that has everything riding on their public image, who have incentives to minimize this kind of thing?”

What Happens Next?

Wired Magazine reported that someone paid the ransomware gang believed to be behind the attack $22 million in bitcoin. If that was indeed a ransom intended to resolve some aspect of the breach, it’s a bonanza for hackers.

Cybersecurity experts say some hospitals that have suffered attacks have faced ransom demands for as little as $10,000 and as much as $10 million. A large payment to the Change hackers could incentivize more attacks.

“When there’s gold in the hills, there’s a gold rush,” said Josh Corman, another co-founder of I Am The Cavalry and a former federal cybersecurity official.

Longer-term, the attack intensifies questions about how the private companies that comprise the U.S. health system and the government that regulates them are defending against cyberthreats. Attacks have been common: Thieves and hackers, often believed to be sponsored or harbored by countries like Russia and North Korea, have knocked down systems in the United Kingdom’s National Health Service, pharma giants like Merck, and numerous hospitals.

The FBI reported 249 ransomware attacks against health care and public health organizations in 2023, but Corman believes the number is higher.

But federal efforts to protect the health system are a patchwork, according to cybersecurity experts. While it’s not yet clear how Change was hacked, experts have warned a breach can occur through a phishing link in an email or more exotic pathways. That means regulators need to consider hardening all kinds of products.

One example of the slow-at-best efforts to mend these defenses concerns medical devices. Devices with outdated software could provide a pathway for hackers to get into a hospital network or simply degrade its functioning.

The FDA recently gained more authority to assess medical devices’ digital defenses and issue safety communications about them. But that doesn’t mean vulnerable machines will be removed from hospitals. Products often linger because they’re expensive to take out of service or replace.

Senator Mark Warner (D-Va.) has previously proposed a “Cash for Clunkers”-type program to pay hospitals to update the cybersecurity of their old medical devices, but it was “never seriously pursued,” Warner spokesperson Rachel Cohen said. Riggi said such a program might make sense, depending on how it’s implemented.

Weaknesses in the system are widespread and often don’t occur to policymakers immediately. Even something as prosaic as a heating and air conditioning system can, if connected to a hospital’s internet network, be hacked and allow the institution to be breached.

But erecting more defenses requires more people and resources — which often aren’t available. In 2017, Woods and Corman assisted on an HHS report surveying the digital readiness of the health care sector. As part of their research, they found a slice of wealthier hospitals had the information technology staff and resources to defend their systems — but the vast majority had no dedicated security staff. Corman calls them “target-rich but cyber-poor.”

“The desire is there. They understand the importance,” Riggi said. “The issue is the resources.”

HHS has proposed requiring minimum cyberdefenses for hospitals to participate in Medicare, a vital source of revenue for the entire industry. But Riggi says the AHA won’t support it.

“We oppose unfunded mandates and oppose the use of such a harsh penalty,” he said.

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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