If you or someone you know may be experiencing a mental health crisis, contact the 988 Suicide & Crisis Lifeline by dialing or texting “988.”

Eight days before my 33rd birthday in April, a social worker at a crisis clinic near Denver determined I was an imminent danger to myself. She placed me on an involuntary 72-hour mental health hold.

What came next wasn’t treatment, but a search for a bed. Clinic staffers called area hospitals with inpatient psychiatric units, asking if they had available beds. They didn’t. So, I was told I had to spend the night at the clinic, which is open 24/7. I settled into a recliner, trying to make myself comfortable as my mind drifted in a blank, disassociated haze. Sleep came in brief bursts.

Since the 1950s, the United States has seen a nationwide due in part to deinstitutionalization and the rise of antipsychotics. But that has created a critical shortage for those needing help. From 2011 to 2023, the number of hospitals with inpatient psychiatric units , according to a 2025 study. Another study from that year found that this country has 28.4 inpatient psychiatric beds per 100,000 people — not even half the 60-bed ratio researchers frequently refer to as the .

The shortage has created what the American Psychiatric Association : emergency rooms overwhelmed with people suffering from severe mental health illnesses, inpatient stays prematurely shortened to speed up bed turnover, and acutely ill individuals left without critical care.

“Where are these people going?” said , an assistant health policy professor at Rutgers University, who co-authored those 2025 studies. “For people who don’t receive this care, they don’t just go away. How is it affecting them? Society? Their families?”

Meanwhile, the White House shut down the part of the national suicide hotline catering to LGBTQ+ youth, President Donald Trump’s 2027 budget proposal calls for cuts to agencies , and Health and Human Services Secretary Robert F. Kennedy Jr. recently announced a plan to .”

A Fractured System

I was already intimately familiar with the country’s fractured mental healthcare system before I was involuntarily committed. What I had yet to experience myself, I saw through my wife: waitlists, outpatient programs stretched beyond capacity, and inpatient psychiatric care so scarce that access often depends on surviving a crisis severe enough to justify it.

She died by suicide after we had separated.

As the years passed, grief and anxiety pushed me from observer to patient.

At the crisis clinic, I woke up the following morning disoriented and groggy. In the bathroom — its door deliberately unable to latch, swinging both ways so staffers could enter in case of an emergency — I stood at the sink and watched the faucet run, trying to piece together how I had ended up here.

America’s history of treating mental illness is long and complicated.

The 19th and 20th centuries saw the removal of people with severe mental disorders from jails and — squalid facilities designed to house the poor — to state asylums that (though they ultimately became ). From the 1860s to the 1930s, the number of psychiatric hospitals increased dramatically, according to the American Psychiatric Association, and by 1955, the number of psychiatric beds in the U.S. peaked at more than half a million.

However, owing to the development of antipsychotics, the belief that psychiatric institutions were inhumane, and President John F. Kennedy’s 1963 to free thousands of Americans from a life in institutions, many state hospitals shut down. An estimated for adults and kids are left in a country where more than 14 million experience severe mental illness each year.

Two years after JFK’s legislation passed, a new policy prohibited federal Medicaid funds from covering inpatient psychiatric care in facilities . The goal was to encourage states to move patients out of large, often substandard psychiatric institutions into community-based care settings.

The consequences of these changes, however, have been far-ranging. People with severe mental illnesses are often forced to as they wait for a bed to open. The length of stay in state psychiatric hospitals , according to research by the Treatment Advocacy Center, a national organization focused on eliminating barriers to the treatment of severe mental illness. And some people with mental illness .

From 1986 to 2014, as the behavioral health crisis intensified, mental health expenditures in the U.S. rose from $32 billion to $186 billion — though the proportion of that spending allocated to inpatient care .

This period also recorded major policy shifts affecting inpatient hospitalization rates, notably the 1999 U.S. Supreme Court decision in Olmstead v. L.C. The ruling shifted care away from psychiatric facilities by mandating states to people with developmental and mental disabilities.

“The road to hell is paved with good intentions,” said Leslie Carpenter, legislative advocacy manager at the Treatment Advocacy Center. “A lot of these bills, including the Community Mental Health Act, were really well intended and ended up with adverse consequences.”

For me, that next day at the clinic passed both painfully slowly and in a blur. A staff member I hadn’t met before told me they were still reaching out to hospitals across the region. The search for a bed continued.

‘No One Wants To Pay for Any of This Care’

Last year, members of Congress introduced two bills to change the 16-bed Medicaid funding cap at inpatient psychiatric facilities, the and the , which would increase the cap to 36 beds. Both have stalled in the House.

According to the Congressional Budget Office, a federal agency that analyzes budgetary and economic issues, eliminating the 16-bed limit would increase Medicaid expenditures from 2024 to 2033.

“No one wants to pay for any of this care that people need,” said Colorado state Sen. , a Democrat who has witnessed limitations to Colorado’s mental healthcare system firsthand because her son has schizoaffective disorder.

In lieu of federal action, states are stepping up to bridge the gaps.

Colorado, 15 other states, and Washington, D.C., now operate under waivers allowing Medicaid to fund inpatient facilities for mental health treatment, according to KFF data. Seven additional states have waivers pending. One 2025 study found that these waivers may be tied to fewer hospitalizations, emergency department visits, and incarcerations .

Yet even local efforts to improve mental healthcare face resistance. In California, Colorado, Iowa, Missouri, Nebraska, and New York, locals have pushed back against proposed psychiatric facilities for minors, claiming such facilities will worsen safety and lower property values. Behavioral health advocates have disputed these claims and argued they are rooted in stigma.

That psychiatric facility in Colorado was . The state has nearly 20 inpatient beds per 100,000 people, , according to 2022 data across all 50 states plus Washington, D.C., collected by the Treatment Advocacy Center. Wyoming ranked first with 47.3 beds per 100,000 residents, although, as the least populous state, it has only 275 total inpatient beds compared with California’s 5,703. Minnesota ranked last, with only 4.3 inpatient beds per 100,000 residents.

While increasing the number of inpatient psychiatric beds is vital, mental health advocates are also calling for , such as peer support specialists and clubhouses, where people with serious mental illnesses can learn life skills and find community.

When it came time for me to use our mental health safety net, I was among the fortunate ones: At noon the day after my hold began, a bed opened at a hospital in Denver — a rare stroke of luck in a system in which many people wait days or weeks for the care they need. An ambulance transferred me to the hospital at 3 p.m., marking 21 hours into my 72-hour hold.

Two days later, on my last day at the psychiatric hospital, I stood outside the nurse’s station awaiting discharge papers.

A man I had not seen before looked at me and asked, “Are you leaving?”

“Yes,” I said. “Are you being admitted?”

“Yeah,” he responded. “This is my third time being hospitalized in a year.”

I shook his hand. “Good luck,” I said, and I walked out the door.

This <a target="_blank" href="/health-industry/psychiatric-bed-shortage-overburdened-health-system/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

Read more coverage from our “Bill of the Month,” “Health Care Helpline,” and “Priced Out” series:

• “How To Make a High-Deductible Health Plan Work for You,” by Jackie Fortiér.
• “To Avoid Care Disruptions, Know When the Clock Runs Out on Your Prior Authorization,” by Sarah Boden.
• “So Your Insurance Dropped Your Doctor. Now What?” by Bram Sable-Smith.

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The waiver program, run by the Department of Health and Human Services, allows physicians who aren’t U.S. citizens to stay in the country while transitioning from the visa they used during their training to temporary worker status. In exchange, the doctors agree to work in underserved areas for at least three years.

“It will be the patients that suffer the most because in about three months, there’s going to be hundreds of places that are not going to have a physician that should have,” said a psychiatrist caught in the delay.

The doctor — whom ºÚÁϳԹÏÍø News agreed not to identify because they fear government reprisal — was among hundreds who applied this year for a J-1 visa waiver through the HHS Exchange Visitor Program.

If they receive one, the psychiatrist — who attended medical school in their home country in Europe before coming to the U.S. for their residency and fellowship — would work with vulnerable and disadvantaged patients in New York.

In recent years, the HHS program reviewed waiver applications in one to three weeks, according to two immigration attorneys.

But it currently has a backlog of hundreds of applications, which still need to be reviewed by the State Department and approved by U.S. Citizenship and Immigration Services, according to four attorneys interviewed by ºÚÁϳԹÏÍø News.

They said the foreign physicians will likely have to return to their home countries if their applications don’t advance to USCIS by July 30.

For them to reenter the U.S., their employers would have to pay a new $100,000 fee associated with the H-1B work visa. It’s a cost that many hospitals and clinics in rural and underserved areas say they can’t afford. “That’s the cliff that this train is headed for,” said Charles Wintersteen, a Chicago-based attorney who specializes in health workforce-related immigration.

HHS spokesperson Emily Hilliard didn’t answer questions about the number of pending applications or explain what caused the delays. But she said the Exchange Visitor Program has reviewed all fiscal year 2025 clinical J-1 waiver applications, as well as some from fiscal 2026.

The department is “implementing key process improvements to prevent future delays” and “working diligently” to evaluate remaining applications ahead of the July 30 deadline, she said.

The psychiatrist in limbo said employers hiring J-1 waiver physicians have to show they were unable to fill positions with American workers. If the doctors they planned to hire can’t arrive on time — or at all — patients will have to wait even longer for those vacancies to be filled, they said.

Wintersteen said postgraduate medical education positions are largely funded through Medicare and that “the taxpayers who pay for that training will not get the benefit of it.”

Physicians and immigration attorneys said HHS hasn’t explained the delays or let them know what to expect from their applications.

“Why would HHS want to take a program that is working — a program that places hundreds of U.S. trained international physicians in highly underserved parts of the country every year — and slow-walk it into non-existence,” Jennifer Minear, a Virginia-based health workforce immigration lawyer, said in an email. “How does that serve the public health? It is baffling.”

Waylaid Waivers

The U.S. healthcare system depends on foreign-born professionals to fill its ranks of doctors, nurses, technicians, and other health providers, particularly in chronically understaffed facilities in rural and low-income urban communities.

Nearly a quarter of physicians in the U.S. went to medical school outside the U.S. or Canada, according to .

Once noncitizens complete postgraduate education in the U.S., which typically ends on June 30, they must return to their home country and wait two years before applying for an H-1B work visa. Or, they can seek , which lets them remain in the U.S. on H-1B status in exchange for working for three years in a provider shortage area.

The attorneys said they’re seeing delays only in the Exchange Visitor Program, not in the other federal or state J-1 waiver programs.

The HHS clinical care program received 750 waiver applications last year, Minear and Wintersteen said, and is reserved for doctors working in pediatrics, psychiatry, family and internal medicine, or obstetrics and gynecology.

The program typically needs to forward recommendations to the State Department by mid-March, from John Whyte, CEO of the American Medical Association.

Minear said HHS stopped processing applications in late September or early October before it started forwarding them again a few months ago.

“But the pace is dramatically slower” than usual, she said.

Minear said the State Department usually takes two or three months to review HHS recommendations and must send them to USCIS before July 30 for most of the doctors to stay in the country.

If they don’t make that deadline, Wintersteen said, doctors will have to leave the country unless they obtain another kind of visa, get a J-1 waiver through another program, or extend their current visa by taking board exams or doing additional training.

The psychiatrist, who is supposed to start work on July 1, said they applied for a waiver in order to stay in the U.S with their partner, and because it would let them help the most vulnerable mental health patients. They said their future clients would likely include trafficking survivors, homeless people, and prison or jail inmates. “That’s the population I want to work with,” they said.

Waiver Delay Meets H-1B Dilemma

President Donald Trump issued a that railed against the tech industry’s use of H-1B work visas. The order created the $100,000 fee that applies to workers in all fields — not only tech — living outside the U.S. The payment doesn’t apply to those already in the country.

As of Feb. 15, employers had paid the fee for 85 workers, from USCIS. It’s unclear if any of those payments were for physicians or other medical providers.

The psychiatrist said officials at the hospital that plans to hire them said they can’t afford to pay to bring them back to the U.S. if they must go home.

“A lot of hospitals who hire J-1 waiver physicians are in underserved areas, and so they treat Medicare and Medicaid patients,” they said. “By definition, for the most part, they’re not rich hospitals.”

Barry Walker, an attorney in Tupelo, Mississippi, focused on health workforce-related immigration, said employers have already spent money on recruiters and attorneys like him to help with the waiver process.

Adding the H-1B fee is “just a deal killer, especially for the small, rural hospitals,” he said.

Attorneys said most employers will sponsor physicians in need of an H-1B visa only if they’re in lucrative specialties, such as cardiology or orthopedics, in which they can recover the cost of the fee.

They said healthcare facilities are much less likely to pay the fee to hire foreign nurses, lab technicians, and other healthcare professionals who are more likely than physicians to complete their training outside the U.S.

Employers , but attorneys said they haven’t heard of a hospital or clinic being granted one.

Fighting on Two Fronts

Physicians, hospital leaders, lawmakers, and immigration experts are trying to draw attention to the J-1 waiver delays at HHS while hoping to overturn or limit the new H-1B fee.

The Trump administration hasn’t acted on letters from , , and that requested an exception to the $100,000 fee for physicians or all healthcare workers.

In March, a bipartisan group of lawmakers that would create a healthcare exemption. It has not yet had a hearing.

At least three lawsuits — from the , a , and a that includes a company that recruits foreign nurses and a union that represents medical graduates — are seeking to end the fee entirely.

As for the J-1 waiver delays, the American Medical Association CEO asked the Exchange Visitor Program to use “emergency batch processing” for physicians with contracts to start work this summer.

Efrén Manjarrez, president of the Society of Hospital Medicine, which represents doctors who work in inpatient units, also called for emergency measures.

“Every day this backlog persists is a day that hospitalized patients in these communities face greater risk,” to the program.

Meanwhile, Canadian hospitals have been recruiting foreign physicians completing their training in the U.S, the psychiatrist said. They said one of their friends accepted an offer, withdrawing their HHS waiver application to head north.

The psychiatrist said if they must leave the U.S., they’ll be separated from their partner and out of a job for months as they work to get licensed in their home country.

Even if their employer were able to afford the H-1B fee, they’re not sure they’d want to return.

“This entire process has been so incredibly painful and just soul-crushing,” they said. “I would rather go to a country that would appreciate my motivation to work with patients.”

This <a target="_blank" href="/health-industry/hhs-exchange-visitor-program-visa-waiver-j1-h1b-delays-foreign-doctors-deadline/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

If you or someone you know may be experiencing a mental health crisis, contact the 988 Suicide & Crisis Lifeline by dialing or texting “988.”

Vince Lahey of Carefree, Arizona, embraces chatbots. From Big Tech products to “shady” ones, they offer “someone that I could share more secrets with than my therapist.”

He especially likes the apps for feedback and support, even though sometimes they berate him or lead him to fight with his ex-wife. “I feel more inclined to share more,” Lahey said. “I don’t care about their perception of me.”

There are a lot of people like Lahey.

Demand for mental health care has grown. Self-reported poor mental health days rose by 25% since the 1990s, analyzing survey data. According to the Centers for Disease Control and Prevention, suicide rates in 2022 that hadn’t been seen in nearly 80 years.

There are many patients who find a nonhuman therapist, powered by artificial intelligence, highly appealing — more appealing than a human with a reclining couch and stern manner. with begging for a therapist who’s “not on the clock,” who’s less judgmental, or who’s just less expensive.

Most people who need care don’t get it, said Tom Insel, former head of the National Institute of Mental Health, citing his former agency’s research. Of those who do, 40% receive “minimally acceptable care.”

“There’s a massive need for high-quality therapy,” he said. “We’re in a world in which the status quo is really crappy, to use a scientific term.”

Insel said engineers from OpenAI told him last fall that about 5% to 10% of the company’s then-roughly 800 million-strong user base rely on ChatGPT for mental health support.

Polling suggests these AI chatbots may be even more popular among young adults. A KFF poll found about 3 in 10 respondents ages 18 to 29 for mental or emotional health advice in the past year. Uninsured adults were about twice as likely as insured adults to report using AI tools. And nearly 60% of adult respondents who used a chatbot for mental health didn’t follow up with a flesh-and-blood professional.

The App Will Put You on the Couch

A burgeoning industry of apps offers AI therapists with human-like, often unrealistically attractive avatars serving as a sounding board for those experiencing anxiety, depression, and other conditions.

ºÚÁϳԹÏÍø News identified some 45 AI therapy apps in Apple’s App Store in March. While many charge steep prices for their services — one listed an annual plan for $690 — they’re still generally cheaper than talk therapy, which can cost hundreds of dollars an hour without insurance coverage.

On the App Store, “therapy” is often used as a marketing term, with small print noting the apps cannot diagnose or treat disease. One app, branded as OhSofia! AI Therapy Chat, had downloads in the six figures, said OhSofia! founder Anton Ilin in December.

“People are looking for therapy,” Ilin said. On one hand, the product’s name ; on the other, it warns in that it “does not provide medical advice, diagnosis, treatment, or crisis intervention and is not a substitute for professional healthcare services.” Executives don’t think that’s confusing, since there are disclaimers in the app.

The apps promise big results without backup. its users “immediate help during panic attacks.” it was “proven effective by researchers” and that it offers 2.3 times faster relief for anxiety and stress. (It doesn’t say what it’s faster than.)

There are few legislative or regulatory guardrails around how developers refer to their products — or even whether the products are safe or effective, said Vaile Wright, senior director of the office of health care innovation at the American Psychological Association. Even federal patient privacy protections don’t apply, she said.

“Therapy is not a legally protected term,” Wright said. “So, basically, anybody can say that they give therapy.”

Many of the apps “overrepresent themselves,” said John Torous, a psychiatrist and clinical informaticist at Beth Israel Deaconess Medical Center. “Deceiving people that they have received treatment when they really have not has many negative consequences,” including delaying actual care, he said.

States such as Nevada, Illinois, and California are trying to sort out the regulatory disarray, enacting laws forbidding apps from describing their chatbots as AI therapists.

“It’s a profession. People go to school. They get licensed to do it,” said Jovan Jackson, a Nevada legislator, who co-authored an enacted bill banning apps from referring to themselves as mental health professionals.

Underlying the hype, outside researchers and company representatives themselves have told the FDA and Congress that there’s little evidence supporting the efficacy of these products. What studies there are — and some companion-focused chatbots are “consistently poor” at managing crises.

“When it comes to chatbots, we don’t have any good evidence it works,” said Charlotte Blease, a professor at Sweden’s Uppsala University who specializes in trial design for digital health products.

The lack of “good quality” clinical trials stems from the FDA’s failure to provide recommendations about how to test the products, she said. “FDA is offering no rigorous advice on what the standards should be.”

Department of Health and Human Services spokesperson Emily Hilliard said, in response, that “patient safety is the FDA’s highest priority” and that AI-based products are subject to agency regulations requiring the demonstration of “reasonable assurance of safety and effectiveness before they can be marketed in the U.S.”

The Silver-Tongued Apps

Preston Roche, a psychiatry resident who’s , gets lots of questions about whether AI is a good therapist. After trying ChatGPT himself, he said he was “impressed” initially that it was able to use techniques to help him put negative thoughts “on trial.”

But Roche said after seeing posts on social media discussing people developing psychosis or being encouraged to make harmful decisions, he became disillusioned. The bots, he concluded, are sycophantic.

“When I look globally at the responsibilities of a therapist, it just completely fell on its face,” he said.

This sycophancy — the tendency of apps based on large language models to empathize, flatter, or delude their human conversation partner — is inherent to the app design, experts in digital health say.

“The models were developed to answer a question or prompt that you ask and to give you what you’re looking for,” said Insel, the former NIMH director, “and they’re really good at basically affirming what you feel and providing psychological support, like a good friend.”

That’s not what a good therapist does, though. “The point of psychotherapy is mostly to make you address the things that you have been avoiding,” he said.

While polling suggests many users are satisfied with what they’re getting out of ChatGPT and other apps, there have been about the service or encouragement to self-harm.

And or have been filed against OpenAI after ChatGPT users died by suicide or became hospitalized. In most of those cases, the plaintiffs allege they began using the apps for one purpose — like schoolwork — before confiding in them. These cases are being .

Google and the startup Character.ai — which has been funded by Google and has created “avatars” that adopt specific personas, like athletes, celebrities, study buddies, or therapists — are settling other wrongful-death lawsuits, .

OpenAI’s CEO, Sam Altman, has said up to may talk about suicide on ChatGPT.

“We have seen a problem where people that are in fragile psychiatric situations using a model like 4o can get into a worse one,” Altman said in a public question-and-answer session reported by , referring to a particular model of ChatGPT introduced in 2024. “I don’t think this is the last time we’ll face challenges like this with a model.”

An OpenAI spokesperson did not respond to requests for comment.

The company has said it on safeguards, such as referring users to 988, the national suicide hotline. However, the lawsuits against OpenAI argue existing safeguards aren’t good enough, and some research shows the problems are . OpenAI its own data suggesting the opposite.

OpenAI is , offering, early in one case, a variety of defenses ranging from denying that its product caused self-harm to alleging that the defendant misused the product by inducing it to discuss suicide. It has also said it’s working to .

Smaller apps also rely on OpenAI or other AI models to power their products, executives told ºÚÁϳԹÏÍø News. In interviews, startup founders and other experts said they worry that if a company simply imports those models into its own service, it might duplicate whatever safety flaws exist in the original product.

Data Risks

ºÚÁϳԹÏÍø News’ review of the App Store found listed age protections are minimal: Fifteen of the nearly four dozen apps say they could be downloaded by 4-year-old users; an additional 11 say they could be downloaded by those 12 and up.

Privacy standards are opaque. On the App Store, several apps are described as neither tracking personally identifiable data nor sharing it with advertisers — but on their company websites, privacy policies contained contrary descriptions, discussing the use of such data and their disclosure of information to advertisers, like AdMob.

In response to a request for comment, Apple spokesperson Adam Dema to the company’s App Store policies, which bar apps from using health data for advertising and require them to display information about how they use data in general. Dema did not respond to a request for further comment about how Apple enforces these policies.

Researchers and policy advocates said that sharing psychiatric data with social media firms means patients could be profiled. They could be targeted by dodgy treatment firms or charged different prices for goods based on their health.

ºÚÁϳԹÏÍø News contacted several app makers about these discrepancies; two that responded said their privacy policies had been put together in error and pledged to change them to reflect their stances against advertising. (A third, the team at OhSofia!, said simply that they don’t do advertising, though their app’s notes users “may opt out of marketing communications.”)

One executive told ºÚÁϳԹÏÍø News there’s business pressure to maintain access to the data.

“My general feeling is a subscription model is much, much better than any sort of advertising,” said Tim Rubin, the founder of Wellness AI, adding that he’d change the description in his app’s privacy policy.

One investor advised him not to swear off advertising, he said. “They’re like, essentially, that’s the most valuable thing about having an app like this, that data.”

“I think we’re still at the beginning of what’s going to be a revolution in how people seek psychological support and, even in some cases, therapy,” Insel said. “And my concern is that there’s just no framework for any of this.”

This <a target="_blank" href="/mental-health/ai-chatbots-therapy-big-risks-few-regulations/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

The federal government doesn’t track how many children have entered foster care because of immigration enforcement actions, leaving it unclear how often it happens. In Oregon, as of February two children had been placed in foster care after being separated from their parents in immigration detention cases, according to Jake Sunderland, a spokesperson for the Oregon Department of Human Services.

“Before fall 2025, this simply had never happened before,” Sunderland said.

As of mid-February, nearly by Immigration and Customs Enforcement. The record 73,000 people in detention in January represented an compared with one year before. According to , parents of 11,000 children who are U.S. citizens were detained from the beginning of Trump’s term through August.

The news outlet NOTUS that at least 32 children of detained or deported parents had been placed in foster care in seven states.

Sandy Santana, executive director of Children’s Rights, a legal advocacy organization, said he thinks the actual number is much higher.

“That, to us, seems really, really low,” he said.

Separation from a parent is deeply traumatic for children and can lead to , including post-traumatic stress disorder. Prolonged, intense stress can lead to more-frequent infections in children and developmental issues. That “toxic stress” is also associated with responsible for learning and memory, according to KFF.

, and amended existing laws during Trump’s first term to allow guardians to be granted temporary parental rights for immigration enforcement reasons. Now the enforcement surge that began after Trump returned to office last year has prompted a new wave of state responses.

In New Jersey, lawmakers are considering to amend a state law that allows parents to nominate standby, or temporary, guardians in the cases of death, incapacity, or debilitation. The bill would add separation due to federal immigration enforcement as another allowable reason.

Nevada and California passed laws last year to protect families separated by immigration enforcement actions. California’s law, called the , allows parents to nominate guardians and share custodial rights, instead of having them suspended, while they’re detained. They regain their full parental rights if they are released and are able to reunite with their children.

There are significant legal barriers to reunification once a child is placed in state custody, said Juan Guzman, director of children’s court and guardianship at the Alliance for Children’s Rights, a legal advocacy organization in Los Angeles.

If a parent’s child is placed in foster care and the parent cannot participate in required court proceedings because they are in detention or have been deported, it’s less likely they will be able to reunite with their child, Guzman said.

are U.S. citizens who live with a parent or family member who does not have legal immigration status, according to research from the Brookings Institution, a Washington, D.C.-based think tank. Within that group, 2.6 million children have two parents lacking legal status.

Santana said he expects the number of family separation cases to grow as the Trump administration continues its immigration enforcement campaign, putting more children at risk of being placed in foster care.

the agency to make efforts to facilitate detained parents’ participation in family court, child welfare, or guardianship proceedings, but Santana said it’s uncertain whether ICE is complying with those rules.

ICE officials did not respond to requests for comment for this report.

Before the change in California’s law, the only way a parent could share custodial rights with another guardian was if the parent was terminally ill, Guzman said.

If parents create a preparedness plan and identify an individual to assume guardianship of their children, the state child welfare agency can begin the process of placing the children with that individual without opening a formal foster care case, he added.

While Nevada lawmakers expanded an existing guardianship law last year to include immigration enforcement, the measure requires the parents to take the additional step of filing notarized paperwork with the secretary of state’s office, said Cristian Gonzalez-Perez, an attorney at Make the Road Nevada, a nonprofit that provides resources to immigrant communities.

Gonzalez-Perez said some immigrants are still hesitant to fill out government forms, out of fear that ICE might access their information and target them. He reassures community members that the state forms are secure and can be accessed only by hospitals and courts.

The Trump administration has taken through the Centers for Medicare & Medicaid Services, the IRS, the Supplemental Nutrition Assistance Program, the Department of Housing and Urban Development, and other entities.

Gonzalez-Perez and Guzman said that not enough immigrant parents know their rights. Nominating a temporary guardian and creating a plan for their families is one way they can prevent feelings of helplessness, Gonzalez-Perez said.

“Folks don’t want to talk about it, right?” Guzman said. “The parent having to speak to a child about the possibility of separation, it’s scary. It’s not something anybody wants to do.”

This <a target="_blank" href="/courts/immigrants-ice-arrests-family-separation-children-foster-care/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

An elementary school teacher chose a low-price health insurance plan but soon realized she wasn’t clear about what it would mean for her family’s finances.

“Once I got the insurance card, I compared our old plan to our new plan, and that’s when I really got worried, because I didn’t really understand what a deductible was. It got me thinking, how do I use this insurance?”

— Madison Burgess, 31, of San Diego

When enhanced federal subsidies expired at the end of 2025, a lot of people buying their own health insurance on the state and federal exchanges saw their expected monthly rates jump. To keep costs down, many switched to a high-deductible health plan. These plans offer lower monthly payments, but in exchange patients can face steep out-of-pocket costs when they need care.

The plans are pretty common. In 2023, 30% of people who got insurance through their employer had a high-deductible plan, up from only 4% in 2006.

Madison Burgess, a teacher in San Diego, gets health insurance through her teaching job. But when she investigated adding her husband to her plan, it was just too expensive, so she started shopping on the exchange for a cheaper option for him.

The longer she scrolled through the plan options, the more overwhelming it felt. Insurance jargon made it hard to tell what her family would owe if her husband got sick.

“I didn’t know what a deductible was, so I just went with what was cheap, and now I have regret,” she said.

In exchange for that lower monthly premium payment, her husband’s coverage won’t kick in for most care until they’ve paid $5,800 in medical bills. Burgess didn’t know that the deductible must be met before insurance picks up part of the tab.

Deductible:

The amount you as the patient have to pay before insurance picks up part of the tab

Premium:

The monthly bill for your policy, paid to the insurance company

How do you prepare for thousands of dollars in upfront costs? One option is a health savings account, or HSA, which lets you save pretax money and is now available to people enrolled in lower-tier state and federal exchange plans, including bronze and catastrophic coverage. These plans generally have the lowest premiums on the exchange but the highest out-of-pocket costs when you need care.

Burgess had chosen a bronze plan and didn’t know HSAs were an option.

“I’ve never thought about having to put money away for a deductible,” she said.

Burgess and others are often more worried about socking away money for unexpected car and house repairs or vet bills.

If, like Burgess, you chose cheaper health coverage for this year only to discover you’re on the hook for meeting a high deductible, these tips can help you prepare.

1. You might qualify for an HSA and not know it.

If you’re enrolled in a bronze or catastrophic plan, you qualify to open a health savings account. Think of it as a medical piggy bank with tax perks. You put in pretax money, which lowers your taxable income. The money grows tax-free, and when you spend it on , those transactions are also tax-free. That’s what people call a “triple tax advantage.”

These accounts build a cushion for future health costs, such as doctor visits, prescriptions, and even products like over-the-counter medicine, tampons, and sunscreen.

The money typically can’t be used for monthly premiums, but the account is yours to use for qualified medical expenses for yourself, your spouse, or your dependents anytime in the future. The money in the account is yours, even if you change jobs or health plans.

An HSA is not the same as a flexible spending account, or FSA. FSAs are tax-advantaged too but are offered only through employers. The money expires annually and you lose any remaining money when you leave that job.

2. HSA-curious? Here’s how to open one.

You open a health savings account through a bank or other financial institution. The institution will issue you a debit card so you can make purchases from the HSA.

You can at any point during the year as long as you’re covered by an eligible plan. You can choose where to open the account, but be sure to check for any fees financial institutions charge and shop around.

If you get insurance through your job, your employer may require you to use a specific IRS-approved company.

Many people decide they can’t afford to contribute to an HSA. For some households, the desire to set aside money for medical expenses competes with the need to pay rent and buy groceries.

But there’s a detail that can make it feel more manageable. Contributions don’t have to be large. Just a few dollars a month can get you started.

There is, however, a limit. The IRS sets an annual cap on how much you’re allowed to contribute to an HSA. In 2026, an individual is limited to $4,400, or $8,750 for a family plan. Under that ceiling, the amount is up to you.

3. Preventive services should be covered at no cost to you.

All plans sold on marketplaces must cover at no cost to the patient as long as the care is provided in-network. Those services include routine immunizations and cancer screenings.

Beyond preventive care, understanding what different services cost can help you decide which type of medical appointment works best for your health needs and your wallet. For example, some plans charge less for a telehealth visit than to see your primary care doctor in person.

Check out your for more details.

4. Seek care early in the year.

Most deductibles reset on Jan. 1. Scheduling appointments or surgeries early in the year can be strategic if you discover a condition that requires ongoing care. If you can afford it, meeting your deductible sooner can make the rest of the year significantly cheaper, said Caitlin Donovan, a senior director at the Patient Advocate Foundation.

5. Consider paying cash instead of spending down your deductible.

Some hospitals, clinics, or other providers offer cheaper prices if you pay cash. You have the and explanation of how much a health service would cost if you paid out-of-pocket. Ask for the estimate before you get care. Then, compare that price with what your insurance company tells you it would cost if you used your insurance. If you decide to go with a cash payment, you’ll need to pay while you’re still at the doctor’s office, before charges get submitted to your insurance company.

Paying cash may save you money, but the amount you pay generally won’t count toward your deductible or out-of-pocket maximum.

“If you don’t think you’re ever going to hit your deductible — you’re that young invincible, and your deductible is $10,000 — negotiate the cash price,” Donovan said.

6. On an ACA plan? Update your income and use an HSA to avoid a tax surprise.

If you’re on an ACA plan and you’re eligible for subsidies, be aware: If your and you don’t update your marketplace application, you could owe thousands of dollars at tax time. The . Report raises, new jobs, or side gigs as they happen. If your income goes up, stashing money in an HSA can help because the money you put in the account doesn’t count toward your taxable income.

As soon as you report an increase in your income, that could mean higher premiums (if you no longer qualify for the same subsidy), but experts say it’s better to pay now than owe a big bill that you have to pay all at once.

“One of the biggest problems I see is someone is newly unemployed and they sign up for coverage, they say that they’re not making any money, and then eventually they get a job and don’t report it, and then they have this huge tax bill at the end,” Donovan said.

She advises updating your marketplace profile as soon as your income changes, which could newly qualify you for Medicaid or a plan that contributes more toward your medical bills.

Taylor Cook contributed to this report.

Healthcare Helpline helps you navigate the health system hurdles between you and good care. Send us your tricky question and we may tap a policy sleuth to puzzle it out. Share your story. The crowdsourced project is a joint production of NPR and ºÚÁϳԹÏÍø News.

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A woman with multiple sclerosis wanted to be able to walk up the stairs at home without losing her balance. Her doctor prescribed medicine that helped, but then approval from her insurance plan for the drug expired.

“Why do I need a prior authorization for something that I am already prior-authorized to take? If my doctor says that they want me on a medication, why does my insurance have another say in that?”

— Jaclyn Mayo, Lunenburg, Massachusetts

Jaclyn Mayo has multiple sclerosis, an autoimmune disease that damages the nervous system and can mess with coordination and balance. To get steadier on her feet, Mayo had been trying to lose weight: A lighter body puts less stress on the joints and leads to greater flexibility.

After Mayo didn’t have much luck with diet and exercise, her physician prescribed Zepbound, a GLP-1 weight loss medication that suppresses appetite.

“It was really helping me,” she said. “I could go up and down stairs and not feel like I was going to fall.”

As a happy bonus, the GLP-1 seemed to ease other MS symptoms for Mayo: She started sleeping through the night, and the frequent numbness in her hands went away.

After being on Zepbound for seven months, she fell into an insurance pitfall: prior authorization.

In August, her pharmacy wouldn’t refill her prescription, and it wasn’t clear why.

She called her pharmacist, then her doctor’s office, the pharmacist again, then her insurance company. After speaking with the insurance company’s pharmacy benefit manager — a third-party company that oversees prescription drug plans for insurers — Mayo figured out that the advance approval her insurer had granted for the drug, known as prior authorization, had expired.

Insurers require prior authorizations for certain treatments or tests, especially costly ones. When they do, your doctor has to make the preauthorization request to your insurance company, explaining why you need the treatment. Next, the insurer decides if it agrees that the care is medically necessary and if it will pay for it.

Mayo had been taking the weight loss medicine for less than a year and didn’t understand why a new prior authorization was needed so soon. She said she never got a letter or email notifying her that the clock had run out on her first prior authorization. As someone with a chronic illness, Mayo said, she keeps close track of her medical paperwork. She feels like she did everything right, which, she said, made the situation especially infuriating.

Her doctor submitted the necessary paperwork then found out the new approval would take seven to 10 business days.

At this point, Mayo had been off her medication for two weeks. Her sleep was getting worse, and the tingling numbness in her hands returned. So she asked that her prior authorization be expedited, only to learn that her doctor, not Mayo, would need to make the request for an urgent review.

“That red tape was completely avoidable,” she said. “And all that they needed to do was communicate clearly to me. And then I could have continued my medication without delays. But they didn’t.”

Why Insurers Want Prior Authorization

Doctors are often frustrated by the prior authorization process, but insurers argue it helps keep costs down.

AHIP, the insurer trade group formerly known as America’s Health Insurance Plans, declined an interview request. But in an emailed statement, it said that prior authorizations are an important safeguard that helps ensure patients receive safe, evidence-based care and keeps coverage affordable.

In a , the American Medical Association, which represents physicians, said the way health plans use prior authorizations is “opaque and overly complex,” creating delays in care and greater administrative burden.

Patients are also frustrated. A found that 1 in 3 insured adults call prior authorizations a “major burden” to accessing health care.

Mayo hit preauthorization hurdles likely because her physician prescribed a GLP-1, an . The more costly the treatment, the greater the scrutiny, said of the University of Pittsburgh, who studies health politics and administrative burdens within the insurance system.

Issues with prior authorizations are common. Policymakers could standardize how insurance companies evaluate prior authorization requests to prevent more Americans from experiencing medical disruptions, Yaver said.

“It’s a solvable problem, if we have the will and the political conditions are ripe. I don’t think that they are at this particular moment,” she said.

Here’s what to know about getting prior authorization requests approved in a timely manner.

1. Find out when your prior authorization expires.

Individual insurance companies, and even the individual plans within those companies, often have different policies for prior authorizations.

“As you can imagine, that becomes an absolute nightmare,” said physician David Aizuss, chair of the AMA’s board of trustees.

While expensive treatments are more likely to be targeted for prior authorization review, Aizuss said it also happens for low-cost generic drugs.

To figure out how long your prior authorization lasts, reach out to customer service at your insurance company or pharmacy benefit manager, whichever handles your plan’s prior authorizations.

2. Don’t procrastinate.

Getting a prior authorization isn’t always quick, so build in time for things to go wrong.

It took Mayo nearly three weeks to sort out the prior authorization issue for her GLP-1 prescription. She made the initial refill request about a week before her medication was set to run out and ended up without the drug for over two weeks.

3. Ask your doctor to request an expedited review.

As you wait for your prior authorization to go through, your doctor might not know how much medication you have left, or that your health may be declining. You can have your doctor request an expedited review. Though, as Mayo found, insurance companies and PBMs won’t always volunteer that as an option.

When an expedited review is appropriate is up for interpretation, said , director of the Program on Patient and Consumer Protections at KFF, a health information nonprofit that includes ºÚÁϳԹÏÍø News.

“No one knows the specifics of what urgent means,” she said.

require that urgent requests made by people with employer-based plans be decided within 72 hours. And, on Jan. 1, a took effect that creates a similar requirement for all Medicare Advantage, Medicaid, and Children’s Health Insurance Program plans. However, this rule doesn’t apply to medications.

4. Consider other treatment options.

When Mayo’s doctor first suggested that she try a GLP-1, approval for the specific medication was taking a long time. When it became clear the request would probably be denied, the doctor canceled that initial request and put in a prior authorization request for a different brand of GLP-1, Zepbound. It was approved.

Ask your doctor about treatment alternatives. Health plans have different formularies — lists of medicines that are routinely approved. It might be easier to switch medications than to fight to get your health plan to approve coverage.

But be aware that your insurance company might change your health plan’s drug formulary anytime and require you to get a new prior authorization.

5. Don’t be afraid to appeal.

Submit an appeal, even if you’re worried you’ll lose. Yaver said that, based on the research set to be published in , Coverage Denied: How Health Insurers Drive Inequality in the United States, people who appeal a prior authorization or claims denial win about half the time.

First figure out where to send your appeal. Usually, it’s an insurance company, but if the treatment you need is medication, it may be a PBM.

Include detailed records in your appeal.

If you’re trying to get approval for a specific medication, Yaver said, send documentation showing that you tried other medications or treatments that didn’t work. This helps make your case and can speed up the process.

“I actually just went through a prior authorization for my migraine drug,” Yaver said. “It actually went through very quickly.”

Health Care Helpline helps you navigate the health system hurdles between you and good care. Send us your tricky question and we may tap a policy sleuth to puzzle it out. Share your story. The crowdsourced project is a joint production of NPR and ºÚÁϳԹÏÍø News.

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A week earlier, immigration agents had grabbed Julio César Peña from his front yard in Glendale, California. Now, he was in a hospital after suffering a ministroke. He was shackled to the bed by his hand and foot, he told Romero, and agents were in the room, listening to the call. He was scared he would die and wanted his wife there.

“What hospital are you at?” Romero asked.

“I can’t tell you,” he replied.

Viridiana Chabolla, Peña’s attorney, couldn’t get an answer to that question, either. Peña’s deportation officer and the medical contractor at the Adelanto ICE Processing Center refused to tell her. Exasperated, she tried calling a nearby hospital, Providence St. Mary Medical Center.

“They said even if they had a person in ICE custody under their care, they wouldn’t be able to confirm whether he’s there or not, that only ICE can give me the information,” Chabolla said. The hospital confirmed this policy to ºÚÁϳԹÏÍø News.

Family members and attorneys for patients hospitalized after being detained by federal immigration officials said they are facing extreme difficulty trying to locate patients, get information about their well-being, and provide them emotional and legal support. They say many hospitals refuse to provide information or allow contact with these patients. Instead, hospitals allow immigration officers to call the shots on how much — if any — contact is allowed, which can deprive patients of their constitutional right to seek legal advice and leave them vulnerable to abuse, attorneys said.

Hospitals say they are trying to protect the safety and privacy of patients, staff, and law enforcement officials, even while hospital employees in , , and , cities where Immigration and Customs Enforcement has conducted immigration raids, say it’s made their jobs difficult. Hospitals have used what are sometimes called blackout procedures, which can include registering a patient under a pseudonym, removing their name from the hospital directory, or prohibiting staff from even confirming that a patient is in the hospital.

“We’ve heard incidences of this blackout process being used at multiple hospitals across the state, and it’s very concerning,” said Shiu-Ming Cheer, the deputy director of immigrant and racial justice at the California Immigrant Policy Center, an advocacy group.

Some Democratic-led states, including California, Colorado, and Maryland, have enacted legislation that seeks to protect patients from immigration enforcement in hospitals. However, those policies do not address protections for people already in ICE custody.

More Detainees Hospitalized

Peña is among arrested by federal immigration authorities since President Donald Trump returned to the White House. As arrests and detentions have climbed, so too have reports of people taken to hospitals by immigration agents because of illness or injury — due to preexisting conditions or problems stemming from their arrest or detention.

ICE has for using and tactics, as well as for and at its facilities. Sen. Adam Schiff (D-Calif.) told reporters at a Jan. 20 news conference outside a detention center he visited in California City that he spoke to a diabetic woman held there who had not received treatment in .

While there are no publicly available statistics on the number of people sick or injured in ICE detention, the agency’s news releases point to who died in immigration custody in 2025. Six more have died this year.

The Department of Homeland Security, which oversees ICE, did not respond to a request for information about its policies or Peña’s case.

According to , people in custody should be given access to a telephone, visits from family and friends, and private consultation with legal counsel. The agency can make administrative decisions, including about visitation, when a patient is in the hospital, but should defer to hospital policies on contacting next of kin when a patient is seriously ill, the guidelines state.

Asked in detail about hospital practices related to patients in immigration custody and whether there are best practices that hospitals should follow, Ben Teicher, a spokesperson for the American Hospital Association, declined to comment.

David Simon, a spokesperson for the California Hospital Association, said that “there are times when hospitals will — at the request of law enforcement — maintain confidentiality of patients’ names and other identifying characteristics.”

Although policies vary, members of the public can typically call a hospital and ask for a patient by name to find out whether they’re there, and often be transferred to the patient’s room, said William Weber, an emergency physician in Minneapolis and medical director for the Medical Justice Alliance, which advocates for the medical needs of people in law enforcement custody. Family members and others authorized by the patient can visit. And medical staff routinely call relatives to let them know a loved one is in the hospital, or to ask for information that could help with their care.

But when a patient is in law enforcement custody, hospitals frequently agree to restrict this kind of information sharing and access, Weber said. The rationale is that these measures prevent unauthorized outsiders from threatening the patient or law enforcement personnel, given that hospitals lack the security infrastructure of a prison or detention center. High-profile patients such as celebrities sometimes also request this type of protection.

Several attorneys and health care providers questioned the need for such restrictions. Immigration detention is civil, not criminal, detention. The Trump administration says it’s focused on , yet most of those arrested have no criminal conviction, according to data compiled by the and several news outlets.

Taken Outside His Home

According to Peña’s wife, Romero, he has no criminal record. Peña came to the United States from Mexico in sixth grade and has an adult son in the U.S. military. The 43-year-old has terminal kidney disease and survived a heart attack in November. He has trouble walking and is partially blind, his wife said. He was detained Dec. 8 while resting outside after coming home from dialysis treatment.

Initially, Romero was able to find her husband through the . She visited him at a temporary holding facility in downtown Los Angeles, bringing him his medicines and a sweater. She then saw he’d been moved to the Adelanto detention center. But the locator did not show where he was after he was hospitalized.

When she and other relatives drove to the detention facility to find him, they were turned away, she said. Romero received occasional calls from her husband in the hospital but said they were less than 10 minutes long and took place under ICE surveillance. She wanted to know where he was so she could be at the hospital to hold his hand, make sure he was well cared for, and encourage him to stay strong, she said.

Shackling him and preventing him from seeing his family was unfair and unnecessary, she said.

“He’s weak,” Romero said. “It’s not like he’s going to run away.”

say contact and visits from family and friends should be allowed “within security and operational constraints.” Detainees have a constitutional right to speak confidentially with an attorney. Weber said immigration authorities should tell attorneys where their clients are and allow them to talk in person or use an unmonitored phone line.

Hospitals, though, fall into a gray area on enforcing these rights, since they are primarily focused on treating medical needs, Weber said. Still, he added, hospitals should ensure their policies align with the law.

Family Denied Access

Numerous immigration attorneys have spent weeks trying to locate clients detained by ICE, with their efforts sometimes thwarted by hospitals.

Nicolas Thompson-Lleras, a Los Angeles attorney who counsels immigrants facing deportation, said two of his clients were registered under aliases at different hospitals in Los Angeles County last year. Initially, the hospitals denied the clients were there and refused to let Thompson-Lleras meet with them, he said. Family members were also denied access, he said.

One of his clients was , a car wash worker injured during a raid in August. Immigration agents surveilled him for over a month at Harbor-UCLA Medical Center, a county-run facility, without charging him.

In November, the Los Angeles County Board of Supervisors voted to of blackout policies for patients under civil immigration custody at county-run hospitals. In a statement, Arun Patel, the chief patient safety and clinical risk management officer for the Los Angeles County Department of Health Services, said the policies are designed to reduce safety risks for patients, doctors, nurses, and custody officers.

“In some situations, there may be concerns about threats to the patient, attempts to interfere with medical care, unauthorized visitors, or the introduction of contraband,” Patel said. “Our goal is not to restrict care but to allow care to happen safely and without disruption.”

Leaving Patients Vulnerable

Thompson-Lleras said he’s concerned that hospitals are cooperating with federal immigration authorities at the expense of patients and their families and leaving patients vulnerable to abuse.

“It allows people to be treated suboptimally,” Thompson-Lleras said. “It allows people to be treated on abbreviated timelines, without supervision, without family intervention or advocacy. These people are alone, disoriented, being interrogated, at least in Bayron’s case, under pain and influence of medication.”

Such incidents are alarming to hospital workers. In Los Angeles, two health care professionals who asked not to be identified by ºÚÁϳԹÏÍø News, out of concern for their livelihoods, said that ICE and hospital administrators, at public and private hospitals, frequently block staff from contacting family members for people in custody, even to find out about their health conditions or what medications they’re on. That violates medical ethics, they said.

Blackout procedures are another concern.

“They help facilitate, whether intentionally or not, the disappearance of patients,” said one worker, a physician for the county’s Department of Health Services and part of a coalition of concerned health workers from across the region.

At Legacy Emanuel Medical Center in Portland, nurses publicly expressed outrage over what they saw as hospital cooperation with ICE and the flouting of patient rights. Legacy Health has to the nurses’ union, accusing it of making “false or misleading statements.”

“I was really disgusted,” said Blaire Glennon, a nurse who quit her job at the hospital in December. She said numerous patients were brought to the hospital by ICE with serious injuries they sustained while being detained. “I felt like Legacy was doing massive human rights violations.”

Handcuffed While Unconscious

Two days before Christmas, Chabolla, Peña’s attorney, received a call from ICE with the answer she and Romero had been waiting for. Peña was at Victor Valley Global Medical Center, about 10 miles from Adelanto, and about to be released.

Excited, Romero and her family made the two-hour-plus drive from Glendale to the hospital to take him home.

When they got there, they found Peña intubated and unconscious, his arm and leg still handcuffed to the hospital bed. He’d had a severe seizure on Dec. 20, but no one had told his family or legal team, his attorney said.

Tim Lineberger, a spokesperson for Victor Valley Global Medical Center’s parent company, KPC Health, said he could not comment on specific patient cases, because of privacy protections. He said the hospital’s policies on patient information disclosure comply with state and federal law.

Peña was finally cleared to go home on Jan. 5. No court date has been set, and his family is filing a petition to adjust his legal status based on his son’s military service. For now, he still faces deportation proceedings.

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Then 25 years old and six months pregnant, she drove herself to the emergency room in Ronan, Montana, on the Flathead Indian Reservation, where an ambulance transferred her to a larger hospital 60 miles away in Missoula. Once she arrived, the staff couldn’t detect her baby’s heartbeat. Swaney began to bleed heavily. She delivered a stillborn baby and was hospitalized for several days. At one point, doctors told her to call her family. They didn’t expect her to survive.

“It certainly changed my life — the experience — but my life has not been a bad life,” she told ºÚÁϳԹÏÍø News.

Though her experiences were nearly 50 years ago, Swaney, a member of the Confederated Salish and Kootenai Tribes, said Native Americans continue to receive inadequate maternal care. The data appears to support that belief.

In 2024, the most recent year for which data for the population is available, Native American and Alaska Native people had the among major demographic groups, according to the Centers for Disease Control and Prevention.

In response to this disparity, Native organizations, the CDC, and some states are working to boost tribal participation in state maternal mortality review committees to better track and address pregnancy-related deaths in their communities. Native organizations are also considering ways tribes could create their own committees.

State maternal mortality review committees investigate deaths that occur during pregnancy or within a year after pregnancy, analyze data, and issue policy recommendations to lower death rates.

According to 2021 CDC data, compiled from 46 maternal mortality review committees, 87% of maternal deaths in the U.S. were deemed preventable. Committees reported that , deaths among Native American and Alaska Native people were considered preventable.

Our matriarchs, our moms, are what carries a nation forward.

Kim Moore-Salas

State committees have received federal money through the Preventing Maternal Deaths Act, which President Donald Trump signed in 2018.

But the money is scheduled to dry up on Jan. 31, when the short-term spending bill that ended the government shutdown expires.

Funding for the committees is included in the Labor, Health and Human Services, Education, and Related Agencies for fiscal year 2026. That bill must be approved by the House, Senate, and president to take effect.

Native American leaders said including members of their communities in maternal mortality review committee activities is an important step in addressing mortality disparities.

In 2023, tribal leaders and federal officials met to discuss four models: a mortality review committee for each tribe, a committee for each of the 12 Indian Health Service administrative regions, a national committee to review all Native American maternal deaths, and the addition of Native American subcommittees to state committees.

Whatever the model, tribal sovereignty, experience, and traditional knowledge are important factors, said Kim Moore-Salas, a co-chair of the Arizona Maternal Mortality Review Committee. She’s also the chairperson of the panel’s American Indian/Alaska Native mortality review subcommittee and a member of the Navajo Nation.

“Our matriarchs, our moms, are what carries a nation forward,” she said.

Mental health conditions and infection were the leading underlying causes of pregnancy-related death among Native American and Alaska Native women as of 2021, according to the CDC report analyzing data from 46 states.

The CDC found an estimated 68% of pregnancy-related deaths among Native American and Alaska Native people happened within a week of delivery to a year postpartum. The majority of those happened between 43 days and a year after birth.

The federal government has a responsibility under signed treaties to provide health care to the 575 federally recognized tribes in the U.S. through the Indian Health Service. Tribal members can receive limited services at no cost, but the agency is underfunded and understaffed.

A that analyzed data from 2016 to 2020 found that approximately 75% of Native American and Alaska Native pregnant people didn’t have access to care through the Indian Health Service around the time of giving birth, meaning many likely sought care elsewhere. More than 90% of Native American and Alaska Native births occur outside of IHS facilities, . For those who did deliver at IHS facilities, a from the Department of Health and Human Services’ Office of Inspector General found that 56% of labor and delivery patients received care that did not follow national clinical guidelines.

The 2024 study’s authors also found that members of the population were less likely to have stable insurance coverage and more likely to have a lapse in coverage during the period close to birth than non-Hispanic white people.

Cindy Gamble, who is Tlingit and a tribal community health consultant for the American Indian Health Commission in Washington, has been a member of the state’s maternal mortality review panel for about eight years. In the time she’s been on the state panel, she said, its composition has broadened to include more people of color and community members.

The panel also began to include suicide, overdose, and homicide deaths in its data analysis and added racism and discrimination to the risk factors considered during its case review process.

Solutions need to be tailored to the tribe’s identity and needs, Gamble said.

“It’s not a one-size-fits-all,” Gamble said, “because of all the beliefs and different cultures and languages that different tribes have.”

Gamble’s tenure on the state committee is distinctive. Few states have tribal representation on maternal mortality review committees, according to the National Indian Health Board, a nonprofit organization that advocates for tribal health.

The National Council of Urban Indian Health is also the participation of Urban Indian health organizations, which provide care for Native American people who live outside of reservations, in state maternal mortality review processes. As of 2025, the council had connected Urban Indian health organizations to state review committees in California, Kansas, Oklahoma, and South Dakota.

Native leaders such as Moore-Salas find the current efforts encouraging.

“It shows that state and tribes can work together,” she said.

In March 2024, Moore-Salas became the first Native American co-chair of Arizona’s Maternal Mortality Review Committee. In 2025 she and other Native American members of the committee developed guidelines for the American Indian/Alaska Native subcommittee and reviewed the group’s first cases.

The subcommittee is exploring ways to make the data collection and analysis process more culturally relevant to their population, Moore-Salas said.

But it takes time for policy changes to create widespread change in the health of a population, Gamble said. Despite efforts around the country, other factors may hinder the pace of progress. For example, maternity care deserts are growing nationally, caused by rapid hospital and labor and delivery unit closures. Health experts have raised concerns that upcoming cuts to Medicaid will hasten these closures.

Despite her experience and the ongoing crisis among Native American and Alaska Native people, Swaney hopes for change.

She had a second complicated pregnancy soon after her stillbirth. She went into labor about three months early, and the doctors said her son wouldn’t live to the next morning. But he did, and he was transferred about 525 miles away from Missoula to the nearest advanced neonatal unit, in Salt Lake City.

Her son, Kelly Camel, is now 48. He has severe cerebral palsy and profound deafness. He lives alone but has caregivers to help with cooking and other tasks, said Swaney, 73.

He “has a good sense of humor. He’s kind to other people. We couldn’t ask for a more complete child.”

This <a target="_blank" href="/rural-health/native-american-pregnancy-maternal-mortality-mothers-deaths-tribes/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

When Matthew Hurley was looking to take PrEP to prevent HIV, the doctor hadn’t heard of the medicine, and when he finally did prescribe PrEP, the bills sent to Hurley were expensive … and wrong. “I decided to write in because the process was really super frustrating.” At one point, Hurley asked, “Am I just going to stop this medication to stop having to deal with these coding issues and these scary bills?”

— Matthew Hurley, 30, from Berkeley, California

A couple of years ago, Matthew Hurley got the kind of text people fear.

It said: “When was the last time you were STD tested?”

Someone Hurley had recently had unprotected sex with had just tested positive for HIV.

Hurley went to a clinic and got tested. “Luckily, I had not caught HIV, but it was a wake-up call,” they said.

That experience moved Hurley to seek out PrEP, shorthand for preexposure prophylaxis. The antiretroviral medication greatly reduces the chance of getting HIV, the virus that causes AIDS. The therapy is at protecting people against sexual transmission when taken as prescribed.

Hurley started PrEP and all was well for the first nine months — until their health insurance changed and they started seeing a new doctor: “When I brought PrEP up to him, he said, ‘What’s that?’ And I was like, oh boy.”

Hurley, who is a librarian, went into teaching mode. They explained that the PrEP regimen they’d been on required daily pills and lab work every three months to look out for breakthrough infections or other health issues.

Hurley was surprised they knew more about PrEP than the physician. The FDA approved the first drug, Truvada, , and Hurley lives in the San Francisco Bay Area, a place with one of the of LGBTQ+ people in the nation and a of HIV and healthcare activism. Hurley said older friends and acquaintances who survived the AIDS epidemic shared the horror of living through a time when there was no effective treatment or drugs for prevention. Deciding to take PrEP felt like an empowering way to protect their health and their community.

So Hurley pushed the doctor, and after the physician did his own research, he agreed to prescribe PrEP.

Hurley got the care they needed, but they had to be the expert in the exam room.

“That’s a big burden,” said Beth Oller, a family medicine physician and board member of GLMA, a national organization of LGBTQ+ and allied healthcare professionals focused on health equity. “You really want someone you can just go in and talk [to] about your health concerns without feeling like you are having to educate and advocate for yourself at every turn.”

Oller said many queer people have had during healthcare visits.

“I have a lot of patients who had not done preventive care for years because of the medical stigma,” she said.

Billing Headaches

Clearing the access hurdles to HIV prevention medicine was just the beginning. Hurley started receiving a string of bills for PrEP-related care. Blood test: $271.80. Office visit: $263.

Again, Hurley was surprised. They knew — even if the billing office didn’t — that under the most private insurance plans and Medicaid expansion programs are PrEP and ancillary services, , as preventive with no cost sharing.

The bills for doctor visits and blood draws piled up.

Hurley would appeal the bill and get a denial almost every time. Then, they would appeal again.

Hurley shared a series of appeal letters for one service, in which the billing office acknowledged that blood work had been initially incorrectly coded as diagnostic. Once that was corrected, Hurley said, the insurer paid for the service.

That might sound quick or easy to resolve, but Hurley said it took “forever to get through the process.” They dealt with at least six incorrect bills over several months. Hurley estimated they spent more than 60 hours contesting the bills.

During that time, Hurley said, the billing department “is continuing to send me emails and bills that are saying, You’re overdue. You’re overdue. You’re overdue.”

Fed up with the hassles, Hurley decided to find a health provider (and billing office) better informed about PrEP. They settled on the AIDS Healthcare Foundation. The care team there was able to discuss the pros and cons of different PrEP regimens and knew how to navigate the formulary for Hurley’s insurance.

Hurley hasn’t gotten an unexpected bill since.

But siloing sexual healthcare and PrEP off from primary care hasn’t been ideal.

“I have multiple organizations that I have to deal with to get my holistic health dealt with,” Hurley said.

A provider doesn’t need to be an HIV specialist, an infectious disease expert, or a physician to prescribe PrEP. The Centers for Disease Control and Prevention encourages primary care providers to treat PrEP like .

To avoid some of the headaches Hurley faced, try these tips:

1. Find out if PrEP is right for you.

The CDC estimates Americans could benefit from HIV prevention drugs, but just over a quarter of that group have been prescribed them.

“Not enough people know about PrEP, and there are a number of people who know about PrEP but do not realize it’s for them,” said Jeremiah Johnson, executive director of PrEP4All, an organization dedicated to universal access to HIV prevention and medication.

According to the CDC’s clinical guidelines, PrEP can be prescribed as part of a preventive health plan to . It’s especially recommended for people who don’t use condoms consistently, intravenous drug users who share needles, men who have sex with men, and people in relationships with partners living with HIV or whose HIV status is unclear.

The vast majority of PrEP users are men. There are big race, gender, and geographical of HIV and the populations taking the prevention medicine. For example, based on the patterns of new infection in the U.S., a group that would benefit from PrEP is cisgender Black women, whose gender identity aligns with their sex assigned at birth.

2. Don’t assume your provider knows about PrEP.

If your doctors aren’t well informed, start by . There are also clinical guidelines and information you can share with your provider. Check your state or local health department for a how-to guide for prescribing PrEP. For example, the New York State Department of Health AIDS Institute has information .

The , but many of the agency’s websites dealing with LGBTQ+ health are in flux. Under the Trump administration, some HIV/AIDS resources have been taken down from federal websites. Others now have : “This page does not reflect biological reality and therefore the Administration and this Department rejects it.”

3. Get lab work in-network.

Johnson said Hurley’s experience with billing mistakes is common. “The lab expenses in particular end up being very tricky,” Johnson said.

For example, a doctor’s office may mistakenly code the lab work required for PrEP as a instead of preventive care. Patients like Hurley can end up with a bill they shouldn’t have to pay. If your doctor’s office is making mistakes, share the from NASTAD, an association of public health officials who administer HIV and hepatitis programs.

Try to get your lab work done in-network. If the lab is out-of-network, Johnson said, it can be difficult to appeal.

If the bills keep coming, appeal them. And if you can’t resolve the dispute, Johnson said, file a complaint with the agency that regulates your insurance plan.

4. Look for ways to save.

There are different kinds of PrEP. There are lower-cost, generic versions of Truvada, for example, sold as emtricitabine/tenofovir disoproxil fumarate, often shortened to FTC/TDF. Newer PrEP drugs have list prices in the thousands of dollars. Check your insurance formulary and ask your doctor to prescribe medicine your plan will cover.

With many healthcare premiums dramatically increasing and millions at risk of losing Medicaid coverage, many people may go without health insurance this year. Drug manufacturers such as and have assistance programs for qualifying patients. If you have to pay out-of-pocket, prescription price comparison websites, like GoodRx, can help you find the pharmacies with the cheapest price.

5. Consider telehealth.

Telehealth is an option if you don’t live near an affirming provider or are looking for a more private way to get PrEP. In 2024, roughly 1 in 5 people on PrEP used telemedicine. Online pharmacies like and offer PrEP without an in-person appointment, and lab work can be done at home. Some telehealth options have ways to if you’re uninsured.

Telehealth can also broaden the number of doctors who are ready to prescribe PrEP. And some patients say speaking with a remote provider feels like a safer setting to talk about sexual health. “They’re in the comfort of their own bedroom or living room but can interface virtually with a provider. It can open up a lot of doors for honesty and trust,” said Alex Sheldon, executive director of GLMA.

6. Seek out affirming care.

GLMA created the , a searchable database of healthcare providers across the nation who identify as queer-friendly. As Hurley discovered, living in a major metro area is no guarantee your doctor is up to date on LGBTQ+ healthcare.

Ask locals you trust for recommendations. You might be surprised to find good options nearby.

Healthcare Helpline helps you navigate the health system hurdles between you and good care. Send us your tricky question and we may tap a policy sleuth to puzzle it out. Share your story. The crowdsourced project is a joint production of NPR and ºÚÁϳԹÏÍø News.

This <a target="_blank" href="/health-care-costs/health-care-helpline-prep-preexposure-prophylaxis-hiv-prevention-drug-lgbtq-tips/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">