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 Â鶹ŮÓÅ 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.

Â鶹ŮÓÅ Health 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 Â鶹ŮÓÅ Health 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

Â鶹ŮÓÅ Health 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.

Â鶹ŮÓÅ Health 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 Â鶹ŮÓÅ Health 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.”

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

USE OUR CONTENT

This story can be republished for free (details).

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 Â鶹ŮÓÅ.

, 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.”

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

USE OUR CONTENT

This story can be republished for free (details).

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.

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 Â鶹ŮÓÅ Health News.

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

USE OUR CONTENT

This story can be republished for free (details).

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 Â鶹ŮÓÅ, a health information nonprofit that includes Â鶹ŮÓÅ Health 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 Â鶹ŮÓÅ Health News.

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

USE OUR CONTENT

This story can be republished for free (details).

Here are some of our favorites, starting with the poem that stole our hearts like a $0 billing balance — and then was turned into a cartoon by Â鶹ŮÓÅ Health News staff illustrator Oona Zenda.

1st Place

Runner-Up

A box of chocolates?A dozen roses?Just the usual Valentine’s occurrence.I’d rather Cupid chip in for my rising insurance.

– Laura WagnerÌý

Other Newsroom FavoritesÌý

Damn, girl.Are you a menopause expert?Because it’s been impossible to find you.

– Priya Bathija

Feeling lonely on Valentine’s with no PCPI call all the offices, but no one can see me.My insurance suggests telehealth to thicken the plot,but with no one around, I’ll seek care from an AI robot.

– Sara Culley

Roses are red,Violets are blue,If I had to choose health insurance or my house,I wouldn’t know what to do.

– Thy-Ann NguyenÌý

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

USE OUR CONTENT

This story can be republished for free (details).

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 Â鶹ŮÓÅ Health 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.

One of his clients was Bayron Rovidio Marin, 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 Â鶹ŮÓÅ Health 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.

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

USE OUR CONTENT

This story can be republished for free (details).

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 Â鶹ŮÓÅ Health 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 , 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.”

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

USE OUR CONTENT

This story can be republished for free (details).

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 health care 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 health care 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 health care 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 health care 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 health care 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 health care 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+ health care.

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

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.ÌýShare your story. The crowdsourced project is a joint production of NPR and Â鶹ŮÓÅ Health News.

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

USE OUR CONTENT

This story can be republished for free (details).

Both patients, a man and a woman, had agreed to donate their brains after they died for further research. “An amazing gift,” said Edward Lee, the neuropathologist who directs the at the university’s Perelman School of Medicine. “They were both very dedicated to helping us understand Alzheimer’s disease.”

The man, who died at 83 with dementia, had lived in the Center City neighborhood of Philadelphia with hired caregivers. The autopsy showed large amounts of amyloid plaques and tau tangles, the proteins associated with Alzheimer’s disease, spreading through his brain.

Researchers also found infarcts, small spots of damaged tissue, indicating that he had suffered several strokes.

By contrast, the woman, who was 84 when she died of brain cancer, “had barely any Alzheimer’s pathology,” Lee said. “We had tested her year after year, and she had no cognitive issues at all.”

The man had lived a few blocks from Interstate 676, which slices through downtown Philadelphia. The woman had lived a few miles away in the suburb of Gladwyne, Pennsylvania, surrounded by woods and a country club.

The amount of air pollution she was exposed to — specifically, the level of fine particulate matter called PM2.5 — was less than half that of his exposure. Was it a coincidence that he had developed severe Alzheimer’s while she had remained cognitively normal?

With increasing evidence that chronic exposure to PM2.5, a neurotoxin, not only damages lungs and hearts but is also associated with dementia, probably not.

“The quality of the air you live in affects your cognition,” said Lee, the senior author of a recent , one of several large studies in the past few months to demonstrate an association between PM2.5 and dementia.

Scientists have been tracking the connection for at least a decade. In 2020, the influential Lancet Commission to its list of modifiable risk factors for dementia, along with common problems like hearing loss, diabetes, smoking, and high blood pressure.

Yet such findings are emerging when the federal government is dismantling efforts by previous administrations to continue reducing air pollution by shifting from fossil fuels to renewable energy sources.

“‘Drill, baby, drill’ is totally the wrong approach,” said John Balmes, a spokesperson for the American Lung Association who researches the effects of air pollution on health at the University of California-San Francisco.

“All these actions are going to decrease air quality and lead to increasing mortality and illness, dementia being one of those outcomes,” Balmes said, referring to recent environmental moves by the White House.

Many factors contribute to dementia, of course. But the role of particulates — microscopic solids or droplets in the air — is drawing closer scrutiny.

Particulates arise from many sources: emissions from power plants and home heating, factory fumes, motor vehicle exhaust, and, increasingly, wildfire smoke.

Of the several particulate sizes, PM2.5 “seems to be the most damaging to human health,” Lee said, because it is among the smallest. Easily inhaled, the particles enter the bloodstream and circulate through the body; they can also travel directly from the nose to the brain.

The research at the University of Pennsylvania, the largest autopsy study to date of people with dementia, included more than 600 brains donated over two decades.

Previous research on pollution and dementia mostly relied on epidemiological studies to establish an association. Now, “we’re linking what we actually see in the brain with exposure to pollutants,” Lee said, adding, “We’re able to do a deeper dive.”

The study participants had undergone years of cognitive testing at Penn Memory. With an environmental database, the researchers were able to calculate their PM2.5 exposure based on their home addresses.

The scientists also devised a matrix to measure how severely Alzheimer’s and other dementias had damaged donors’ brains.

Lee’s team concluded that “the higher the exposure to PM2.5, the greater the extent of Alzheimer’s disease,” he said. The odds of more severe Alzheimer’s pathology at autopsy were almost 20% greater among donors who had lived where PM2.5 levels were high.

Another research team recently between PM2.5 exposure and Lewy body dementia, which includes dementia related to Parkinson’s disease. Generally considered the second most common type after Alzheimer’s, Lewy body accounts for an estimated 5% to 15% of dementia cases.

In what the researchers believe is the largest epidemiological study to date of pollution and dementia, they analyzed records from more than 56 million beneficiaries with traditional Medicare from 2000 to 2014, comparing their initial hospitalizations for neurodegenerative diseases with their exposure to PM2.5 by ZIP codes.

“Chronic PM2.5 exposure was linked to hospitalization for Lewy body dementia,” said Xiao Wu, an author of the study and a biostatistician at the Mailman School of Public Health at Columbia University.

After controlling for socioeconomic and other differences, the researchers found that the rate of Lewy body hospitalizations was 12% higher in U.S. counties with the worst concentrations of PM2.5 than in those with the lowest.

To help verify their findings, the researchers nasally administered PM2.5 to laboratory mice, which after 10 months showed “clear dementia-like deficits,” senior author Xiaobo Mao, a neuroscientist at the Johns Hopkins School of Medicine, wrote in an email.

The mice got lost in mazes that they had previously dashed through. They had earlier built nests quickly and compactly; now their efforts were sloppy, disorganized. At autopsy, Mao said, their brains had atrophied and contained accumulations of the protein associated with Lewy bodies in human brains, called alpha-synuclein.

A , published this summer in The Lancet, included 32 studies conducted in Europe, North America, Asia, and Australia. It also found “a dementia diagnosis to be significantly associated with long-term exposure to PM2.5” and to certain other pollutants.

Whether so-called ambient air pollution — the outdoor kind — increases dementia because of inflammation or other physiological causes awaits the next round of research.

Although air pollution has declined in the United States over two decades, scientists are calling for still stronger policies to promote cleaner air. “People argue that air quality is expensive,” Lee said. “So is dementia care.”

President Donald Trump, however, reentered office vowing to increase and to block the transition to renewable energy. His administration for solar installations and electric vehicles, Balmes noted, adding, “They’re encouraging continuing to burn coal for power generation.”

The administration has , announced in the Arctic National Wildlife Refuge in Alaska, and moved to stop to transition to electric cars by 2035. (The state has challenged that action in court.)

“If policy goes in the opposite direction, with more air pollution, that’s a big health risk for older adults,” Wu said.

Last year, under the Biden administration, the Environmental Protection Agency for PM2.5, noting that “the available scientific evidence and technical information indicate that the current standards may not be adequate to protect public health and welfare, as required by the Clean Air Act.”

In March, the EPA’s that the agency would be “revisiting” those stricter standards.

The New Old Age is produced through a partnership with .

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

USE OUR CONTENT

This story can be republished for free (details).

Vought has exerted extraordinary control over government spending this year, usurping congressional decisions on how the nation’s money is used. His push for more layoffs during the government shutdown is only the latest blow, following months of firings, canceled grants, and withheld funds.

By cutting and freezing public health funds, in particular, the Trump administration has already begun to undercut efforts to provide medical care, outbreak response, housing assistance, and research across the U.S., according to health officials, nonprofit directors, and federal agency staffers interviewed by Â鶹ŮÓÅ Health News.

Since most federal funds for public health flow to states, Vought is rivaling the Department of Health and Human Services secretary, Robert F. Kennedy Jr., in his ability to upend government-led efforts to keep Americans healthy. In Texas, Centers for Disease Control and Prevention funds to stem a measles outbreak weren’t available until after the crisis had subsided and two children had died. A project to protect Alabamans from and hookworm was abandoned. People with HIV have had to delay medical care as clinics scale back hours. Time-dependent surveys on HIV and were halted. Food banks have canceled events. Tobacco prevention programs lapsed. Initiatives to protect older adults at risk of falling have been harried.

No matter what budget Congress ultimately passes for next year, the Trump administration may continue to thwart financial support for such programs in ways that will harm people’s health. “The White House has shown that they are willing to unilaterally exert control over funding,” said Gillian Metzger, a constitutional law professor at Columbia University.

“This is a huge deal,” she added, “because the power of the purse is central to Congress’ ability to shape and direct policy.”

Before he was appointed to lead the White House’s Office of Management and Budget this year, Vought outlined budgetary strategies the executive branch could deploy to wrest power from Congress and federal agencies in Project 2025, the Heritage Foundation’s conservative blueprint.

Vought’s tactics unfolded this year, often . They include abrupt grant cancellations, extraordinary constraints on how funds can be spent, and excessive layers of review, agency officials say, at every step in the grantmaking process. Getting money out the door has been further complicated by layoffs that have gutted offices overseeing grants on chronic disease prevention, HIV, maternal mortality, and more.

Government employees have described these tactics to members of Congress, said Abigail Tighe, executive director of the National Public Health Coalition, a group that includes current and former staffers at the CDC and HHS. “We want Congress to act, because this is preventing states and communities from doing critical public health work to keep our country safe,” she said. “If they don’t have capacity, we all collectively suffer.”

Democrats on the House and Senate appropriations committees have , but the extent to which money Congress appropriated for public health in 2024 and 2025 has gone unspent because of the administration’s disruptions is not yet known. “This is a sophisticated strategy to cause money to lapse and then say, ‘If they can’t spend it, they don’t need it,’” said Robert Gordon, a public policy specialist at Georgetown University and a former assistant finance secretary at HHS.

“No one thought this was possible or legal, but that is what’s happening,” he said.

Details on how the administration has subverted health spending have received little attention because many changes have been — and people who rely on federal funds fear retribution. The Trump administration has and federal offices that hold the government accountable and . It has abruptly revoked funds for local governments and organizations.

Vought and spokespeople at the White House and the OMB did not respond to queries from Â鶹ŮÓÅ Health News. However, Vought described his intentions in a . He said that federal agencies and Congress had gained more power over spending since the 1970s and that their control became “woke and weaponized” under Presidents Barack Obama and Joe Biden.

“Thankfully, President Trump won,” he said. “And we have now been embarked on deconstructing this administrative state.”

Many Parts, Many Malfunctions

Like a car, the federal budget process has many components that can break down. Through the OMB and its partner, Trump’s Department of Government Efficiency, or DOGE, the administration has intervened at various junctures. “There are so many ways in which money is not operating in the way it is supposed to operate,” said Bobby Kogan, the senior director of federal budget policy at the Center for American Progress, a left-leaning think tank, and a former OMB adviser.

Typically, Congress passes a budget that appropriates money for the next fiscal year to federal agencies. For many public health programs, ranging from housing assistance to cancer screening, agencies then post open calls online for states, local governments, and organizations to apply for funding. Agency experts select winners and send notices of awards — or notices of ongoing funding to groups that previously won multiyear awards.

Next, the OMB, which administers the federal budget, activates money for agencies, like a bank activates a credit card, so that grantees can spend and get reimbursed rapidly. Auditors keep an eye on spending, but the government has in the past limited interruptions so that programs run smoothly.

Early on, the Trump administration canceled billions of dollars in awards granted in 2024 and early 2025 for research and . In March, it $11.4 billion in covid-era funds that Congress had earmarked for health departments that were using the money for disease surveillance, vaccinations, and more.

Although some funds have been restored because of lawsuits, the Supreme Court has allowed by the administration to stand while the cases move through the courts.

Beyond these “shotgun” cancellations, the administration has taken a quieter, “in-the-weeds, slowing, cutting, conditioning” approach that’s frozen funds for public health, said Matthew Lawrence, a law professor specializing in health policy at Emory University.

By August, the CDC’s center for HIV and tuberculosis prevention had doled out $167 million less than the historical average, according to by the Center on Budget and Policy Priorities, a think tank focused on reducing inequality. The CDC’s funding for chronic disease prevention lagged by $259 million, the Ryan White HIV/AIDS Program had underspent by $105 million, and funds for mental health at the Substance Abuse and Mental Health Services Administration were more than $860 million behind what was expected.

An unknown amount of Congress’ 2025 funding for research and public health has yet to be awarded and will probably lapse this year, said Joe Carlile, an author of the center’s analysis and an associate OMB director during the Biden administration. The obstructions appear to be where the White House proposed cutting the federal budget next year. “The administration may be executing their 2026 budget request through administrative controls,” Carlile said.

“This is boring but crazy-high stakes,” he added. “A one-branch veto of spending neuters the power of the purse in the Constitution that Madison said was the fundamental check on the executive branch.”

Incremental Chaos

A key tactic Vought described in Project 2025 occurs when the OMB activates funds for agencies in installments, called apportionments. Vought wrote that “apportioned funding” could “ensure consistency with the President’s agenda.”

Under Vought, the OMB shrank the size of apportionments, HHS and CDC staffers said. It’s to let grantees withdraw money before the total amount is in the metaphorical bank, so that delayed agencies’ ability to greenlight spending.

The OMB and DOGE also placed conditions on apportionments through memos, footnotes, and spoken directives telling agencies to ensure that spending “aligns with Administration priorities,” and HHS employees who said that notices of funding opportunities and awards required excessive layers of sign-off. The CDC and other agencies circulated that reflect White House stances, including those targeting diversity, equity, and inclusion efforts; immigration; and transgender rights. Public health efforts have been especially caught up in red tape, since many focus on populations bearing an unequal burden of death, disease, and injury.

Groups that rely on federal funds have largely been unaware of the reasons grants were held up, but they’ve fielded what they viewed as unsettling queries. For example, Kathy Garner, the head of a Mississippi nonprofit, said officials asked her to defend the exclusion of men from a program to shelter women who experienced domestic violence.

Delays were made worse by uncertainty. Grantees said they’ve been unable to reach program officers because tens of thousands of federal workers have been laid off. Agency officials said firings slow funding further.

“Everyone’s inbox is full of letters from grant recipients asking, ‘How do we proceed?’” one high-ranking CDC official told Â鶹ŮÓÅ Health News, which granted agency officials anonymity because of their fears of retaliation. “We just say, ‘Please wait.’”

Time was critical as a measles outbreak surged in West Texas early this year. The state asked for federal funding for the response in March, but it didn’t arrive until May, after the outbreak had largely faded in Texas, according to an investigation by Â鶹ŮÓÅ Health News. Apportionment control was a key reason, CDC staffers said.

In July, 81 HIV organizations sent a letter to Kennedy. “With every day of delayed FY2025 funding release, the delivery of essential HIV services is compromised,” said the letter, which was reviewed by Â鶹ŮÓÅ Health News. Because of delays and uncertainty, it said, HIV clinics had laid off case managers and reduced clinician hours, closed sites, and pared down hotlines that patients call with urgent questions. The funds arrived about a month later, but HIV providers remain shaken.

Lauren Richey, medical director at University Medical Center’s HIV clinic in New Orleans, backed out of hiring a sorely needed dentist she had recruited. “I was afraid to tell someone to move across the country for a job when I wasn’t sure if or when we’d get the funding for their salary,” she said. “The wait is now three to four months for dental services, when it was usually a couple of weeks at most.”

Tamachia Davenport, program director at the in New Orleans, said that “a lot of us are having to rob Peter to pay Paul.”

When the group didn’t get CDC funds it expected this summer, Davenport had to decide between cutting staff or supplies. Concerned her top employees would take jobs elsewhere, she stopped buying the condoms they distribute throughout the city to prevent the spread of sexually transmitted infections.

Louisiana already has one of the of HIV, chlamydia, and gonorrhea in the country. Condoms cost far less than treating these diseases. For a person infected by HIV at age 35, such $326,000.

Groups focused on cancer, diabetes, and heart disease also report lasting repercussions from delays, as well as ongoing fears that they will happen again. Louisiana State University’s Healthy Aging Research Center canceled some of its workshops to train health workers on caring for people with dementia. “There may be fewer people who have this very specific expertise next year in Louisiana and Mississippi,” said Scott Wilks, the director of the center. “That’s on top of the big shortage we have already.”

Nationwide surveys tallying maternal and froze for about five months because of funding delays, causing an irrecoverable gap in data that had been collected continuously since 1987, CDC officials say.

“We are seeing the administration get their way with or without an approved budget,” one said. “It’s such a terrible shame to play with people’s health this way.”

DOGE also inserted itself into grant reimbursements this year, stalling the rapid turnaround that public health groups typically expect to cover salaries, rent, and other monthly costs outlined in budgets that have already been approved. In what’s now labeled , itemized expenses must be regularly justified by multiple government officials, according to documents reviewed by Â鶹ŮÓÅ Health News.

DOGE posted on expense reports covering about a month’s span from April to May. Nearly 230 of the individual expenses filed to federal agencies during that period are for $1 or less. Other entries break down monthly salaries for individual employees and petty costs for postage or monthly subscriptions.

“Public funds deserve scrutiny, but this is different from audit practices I’ve been a part of,” Carlile said.

DOGE also for applications for 2025 funding — and some calls never appeared as the fiscal year came to a close on Sept. 30. Among them are programs for groups that provide housing assistance. People will be evicted when these organizations run out of money left over from 2024, said Steve Berg, chief policy officer at the National Alliance to End Homelessness.

Other solicitations came out months , leaving groups with a few weeks to put together complicated applications for multimillion-dollar awards, including for , , , and management.

“They’ve set projects up to fail,” one HHS official said.

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

USE OUR CONTENT

This story can be republished for free (details).