Court papers indicate a settlement in the case against the Department of Labor , although the parameters of any such deal are unknown.

It would come amid premium surges on Affordable Care Act marketplaces that have led millions to drop coverage this year. The Trump administration has also been sharply focused on expanding access to alternative coverage, such that avoid ACA rules on preexisting conditions and benefit requirements.

“Depending on what happens with the settlement, this could be an even bigger expansion,” said , director of the Center for Health Policy and the Law at the Georgetown University Law Center. “People are worried that it is the opening salvo into promoting junk plans that don’t meet the ACA requirements.”

The plaintiff, Data Marketing Partnership, against the Department of Labor in 2019, during the first Trump administration. It wants official recognition as an employer so it can continue to allow its limited partners to buy into a type of job-based health insurance that doesn’t have to comply with state insurance rules or offer coverage as robust as required under the ACA.

But to grasp the claim, one also has to understand how the coverage works.

A consumer shopping for health insurance may come across information online or from a marketer about this concept, sometimes called “limited partnership” coverage. The pitch? Buy insurance offered through Data Marketing Partnership and handled by LP Management Services. To qualify, the consumer must download an app that tracks their internet searches. The company could then sell that data.

Some potential consumers may be turned off by the thought of their internet searches being tracked, but others may find it appealing because it allows them to become a limited partner eligible to buy into the company’s employee health insurance plans. But can these partners be considered employees?

The court’s answer has potential implications for regulators and consumers. Some health policy and market experts warn that a green light could lead to a proliferation of aggressively marketed and potentially questionable insurance with limited recourse for consumers because the plans would be exempt from state oversight.

“If this took off, you logically could see the rise of a whole bunch of what, functionally, would be unregulated insurance companies,” said , who was the principal deputy assistant secretary of the Department of Labor’s Employee Benefits Security Administration during Joe Biden’s presidency and now runs his own consulting outfit.

No one knows if the department is going to change its long-running stance defending the case. But any settlement could add more uncertainty to insurance markets.

Already insurers are requesting double-digit increases in ACA premiums again next year, partly because declining enrollment often means that the healthiest policyholders are leaving. That trend could accelerate in coming years as more people are drawn into alternatives such as limited-partnership policies.

States Act as Federal Case Plays Out

The Department of Labor defended the case throughout the first Trump administration and the Biden era, issuing a sharply worded in early 2020 stating that people who simply download software to “capture data as they browse the Internet” are not “employees or bona fide partners.”

A district court judge in Texas, the ACA unconstitutional in a decision ultimately rejected by the Supreme Court, called the advisory opinion “” in a 2020 ruling in favor of the data marketer. The U.S. Court of Appeals for the largely upheld the lower court’s decision but ordered it whether someone who downloads software is either a “working owner” or a “bona fide partner.”

The employer-employee relationship is at the heart of the case because of a designed to help large, self-insured employers offer retirement and health benefits to workers without having to meet varying rules from multiple states.

That law — the Employee Retirement Income Security Act — allows such plans to avoid most rules set by the states, which generally regulate most other types of insurance and assist consumers who report problems with their policies. As self-insured employer plans, the policies also don’t have to comply with some ACA rules, such as the 10 broad categories of “essential health benefits.”

“If the case goes the wrong way, it could impact consumers or hamstring the states,” said Marie Grant, Maryland’s insurance commissioner.

Arguments over what constitutes an employer plan are not new, and other organizations have tried offering such coverage. Some states have taken action against purveyors of limited-partner policies.

Maryland in 2024 , The Vitamin Patch, for offering limited-partnership insurance after investigating complaints and determining it was not licensed to sell coverage in the state.

Washington in 2021 to stop offering its plans in the state and fined it $25,000.

and in 2024 warned consumers about this type of coverage.

“These plans do not provide comprehensive medical coverage and can leave consumers with large, unpaid medical bills,” according to Connecticut’s notice.

Maine’s announcement noted that entities offering these types of health insurance included The Vitamin Patch as well as Affiliated Workers Alliance, Consumer Data Partners, Employers Business Alliance, Socios Buenos, and Strategic Limited Partners.

State insurance commissioners in the Department of Labor case citing their concerns about losing the ability to enforce consumer protections.

“This is not a Republican-Democrat thing,” Khawar said. “It’s really a story about state authority, the way such authority would be significantly undermined in insurance markets.”

What’s the Risk?

Still, these limited-partnership plans are viewed by proponents as a needed additional choice for consumers, at potentially lower cost than ACA plans.

When the case was filed, attorneys general , for example, urged the Department of Labor to back Data Marketing’s request to designate its limited partners as employees. That would provide an option for people who “earn too much to qualify” for ACA subsidies and be an interim solution until the ACA could be repealed and replaced, they wrote. They argued that states would retain some regulatory authority and added that the Department of Labor, which oversees self-insured employer plans, could set requirements to “encourage” stable companies to enter the market.

Critics, the attorneys general wrote, might fear that ACA alternatives will draw away younger or healthier people, thus affecting those who remain, but they argued that had already happened.

Data Marketing’s attorneys emailed Ñî¹óåú´«Ã½Ò•îl Health News that they could not provide a comment for this article because the case is in active litigation. Neither the White House nor the Centers for Medicare & Medicaid Services, which oversees the ACA marketplaces, responded to questions from Ñî¹óåú´«Ã½Ò•îl Health News about whether the Department of Labor has changed its stance and how the administration views limited-partnership health plans.

In court filings, however, Data Marketing said that without an employer designation, it would have to end the insurance coverage, affecting about 50,000 policyholders. That would also hurt its ability to generate revenue, it argued, because offering insurance is “a significant attractor” to get people to join its partnership and let it access their electronic data.

, who helped oversee ACA implementation in the Biden administration and is now a managing director at consultancy Manatt Health, had a different take. “The only reason why these sorts of products exist is because they aren’t beholden to consumer protection rules of the ACA and can essentially make money by attracting good risk, people who are healthy,” she said.

Maryland’s Grant echoed this warning, saying that proliferation of such plans could lead to even higher premiums in the ACA markets, if those who remain are older or sicker than those who leave.

Nineteen patient advocacy groups to the Department of Labor Aug. 11 urging it to continue its defense in the case, warning that a settlement that says such arrangements create an employer-employee relationship could “significantly” undermine “both state regulatory authority and decades of bipartisan efforts to promote stable, well-functioning health insurance markets.” Some of those groups in support of the department in 2021.

Days after the August letter, U.S. Rep. Bobby Scott (D-Va.), the ranking member of the House education and workforce committee, warned the department against increasing the availability of “questionable employment relationships” and the insurance they offer.

He cited reports of call centers’ misleading consumers “who think they are enrolling in comprehensive health insurance but instead sign up for junk coverage under the guise of creating an employment relationship with what the consumer believed to be a traditional health insurer.”

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When making the appointment, Zordani said, he’d been told the clinic was in his insurer’s network. Upon arrival, Zordani was summoned to the clinic’s financial office and told he had to make a $5,000 preservice deposit, because Mayo had since determined it did not accept his insurance. He was automatically designated “self-pay,” even though his plan had out-of-network benefits.

Not having that kind of cash on hand — and angry on principle — he refused. His appointment was canceled.

“I was so livid,” Zordani said, recalling that day in early April 2024. He later learned that Mayo had sent a message to him in his insurance carrier’s patient portal shortly before his visit with an estimate of the cost: $565, not the larger amount it later demanded.

Traditionally, patients usually receive bills for their share only after getting treatment. But what Zordani faced is becoming increasingly common — hospitals or other medical providers seeking prepayments.

“We regret that this individual’s experience did not meet the high standard of communication we strive to provide when helping our patients understand their insurance coverage and financial responsibility,” Andrea Kalmanovitz, Mayo’s communications director, said in an emailed statement. “When prospective patients don’t have clarity that Mayo Clinic is not in-network with their health plan, unexpected pre-service deposit requests may result.”

says it requires prepayments in a variety of cases, including for “noncontracted” — also known as out-of-network — insurance plans.

The trend of hospitals asking for money up front represents a double whammy for patients.

Medical providers are collecting larger shares of what patients might owe at a time when rising deductibles mean patients are owing more for care. The preservice charge could be all or part of a remaining deductible, for example, or a sizable percentage of what the visit or treatment might cost. Those deductibles go up when hospital prices, drug costs, and labor expenses increase, as insurers try to slow premium growth by shifting more costs to patients.

People are “basically being asked to self-insure,” said Richard Gundling, a senior vice president at the Healthcare Financial Management Association, an organization for finance professionals.

As that happens, hospitals figure more patients will have trouble meeting those deductibles, so they want to get as much up front as possible.

“Things like preservice deposits and those kinds of moves are probably going to become more and more likely,” said Chip Kahn, a visiting senior fellow at KFF and the American Enterprise Institute and former president and CEO of the Federation of American Hospitals. “That will make it harder on the provider, the clinician, and harder on the patients.”

The deposits can’t be viewed in isolation, Gundling said: It’s a bigger issue than just hospitals asking for money up front. The challenge, he said, is: “How do we maintain access to care when more patients can’t absorb the level of out-of-pocket costs?”

Already, consumers are increasingly worried about paying for healthcare. A recent found that lower out-of-pocket costs ranked as the top change insured adults would like to see from their coverage plans. KFF is a health information nonprofit that includes Ñî¹óåú´«Ã½Ò•îl Health News.

The average deductible in family coverage offered by employers is $3,762 per person, , while the average deductible in Affordable Care Act plans to a similar amount, $3,786.

A Consumer Concern

, a health insurance consumer assistance program in New York state, hears from people who are concerned about prepayments, said Diane Spicer, a supervising attorney.

“We see this mostly with insured folks who are seeking out-of-network care but who have out-of-network coverage,” Spicer said, “and also sometimes for care that is not covered.”

Just how many hospitals collect what are often called point-of-service payments is not known, according to Kodiak Solutions, a technology company that provides services to health systems to help manage their revenue.

“But it is becoming more and more the center of many of our conversations with health systems,” said , a vice president leading Kodiak’s revenue cycle intelligence team.

In addition to Mayo, Baltimore-based says that “it is our policy to collect all amounts owed before services are rendered” for non-emergency care. University of Texas-affiliated in Houston, one of the nation’s premier cancer treatment centers, says patients who pay for their own care “will be asked to pay an initial deposit determined by the care center, based on the type of cancer.”

On average, hospitals collect about a quarter of what they expect the patient will owe, Szaflarski said, based on what they estimate the insurer will pay — a percentage that has grown in recent years.

For example, if a person is coming in for imaging and the insurer will reimburse $1,000 for that scan, the hospital will seek $250 from the patient up front, he said. “That used to be closer to $150.”

It also varies by hospital, and sometimes by state.

“The state of Indiana has some of the lowest cash collections in the country. They are Midwest nice,” Szaflarski said. He added that California and Texas are among those that collect more.

Even as hospitals increasingly collect more upfront payments, however, their uncollected debt is also rising, according to data Kodiak collected from more than 2,300 hospitals nationwide.

said that’s because of a “fundamental shift” in coverage as plans “increasingly feature higher deductibles, greater coinsurance, and more complex cost-sharing structures: all elements that increase the nominal patient responsibility without improving—and often reducing—the probability of collection.”

While many hospitals are doing fine, some, especially in rural areas, have thin margins — and things could soon tighten further as cuts to ACA and Medicaid funding lead to more people being uninsured.

As a result, hospitals “have to be concerned” about every cost-sharing dollar, Kahn said.

After Zordani returned to Denver, he said, it took a while to find another specialist. He eventually had a procedure in late June 2024, at a Denver hospital not affiliated with Mayo, to fix a .

The following fall, he filed a in Arizona civil court. He was awarded $47,500 in economic damages and attorney fees after an arbitrator in September 2025 determined Mayo violated a state consumer fraud law because it failed to reach him to say that his plan was not in-network before he traveled. Mayo’s statement to Ñî¹óåú´«Ã½Ò•îl Health News did not include any reference to the settlement.

“Had they notified me in timely fashion as required, I would not have flown there,” Zordani said. He’s still angry that the clinic didn’t ask his permission before designating his care as self-pay, which meant he wasn’t going to use his insurance, and he’s still unclear on how they calculated the $5,000 preservice amount.

When Do Consumers Have to Make Preservice Payments?

There is one clear rule: In emergency situations, hospitals that accept federal Medicare financing cannot, , demand upfront payment before stabilizing a patient who arrives at an ER, said , a senior fellow and health policy researcher at the Brookings Institution.

Other consumer protections are less clear.

Patients who get in-network care may have some recourse in their contracts with their insurers, so they should check the fine print, experts told Ñî¹óåú´«Ã½Ò•îl Health News.

“In out-of-network settings, I’m not aware of any barriers that would prevent a provider from doing this,” Fiedler said of preservice deposits.

How those amounts are calculated also appears widely up to the provider and can be opaque.

“They could just say $1,500 and you’d be like, ‘Oh, is that 10%, or is that how much is left on my deductible?’” said , senior director of healthcare campaigns at PIRG, a national federation of independent consumer advocacy groups.

Yet, she added, the patient might be scheduling three months in advance, so the provider wouldn’t know how much was left on the deductible. She recommends consumers ask for an itemized bill and call their insurer to find out whether it has rules regarding the charges.

Also unclear are how and when patients get their money back if they overpay.

Overpayments can happen if patients don’t require the services originally estimated or when insurers pay other bills first, such as the anesthesiology cost or a surgeon’s fees. If those payments are counted toward a patient’s deductible, yet the patient had already made a prepayment to the hospital for the expected deductible, to the hospital.

How soon they get their money back can vary and can depend on state laws, though a small number of states directly address the issue. As of this year, medical providers to reimburse patients within 30 days of a determination of an overpayment. Some states, including Maryland, prohibit certain hospitals from requiring prepayment simply to avoid offering financial assistance.

After alleging that some patients had to wait more than a year to get reimbursed, Arizona Attorney General Kris Mayes recently under state consumer protection laws against SimonMed Imaging, which has 170 locations in 10 states.

, SimonMed agreed to issue refunds within an average of 60 days.

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Last year, Baltimore had three in the span of three months in its Penn North neighborhood.

In one incident, more than two dozen people were hospitalized after many were , lying in the streets or on sidewalks. No one died, but some came close.

Follow-up that the street drugs of N-methylclonazepam, a benzodiazepine that operates similarly to Xanax or Valium. Like opioids, benzodiazepines suppress breathing. When they’re combined, the goes up. And benzodiazepines don’t respond to opioid overdose reversal drugs.

Afterward, the created test strips specifically for benzodiazepines. The group distributed them — along with test strips that identify other harmful adulterants, such as fentanyl, , and medetomidine — at clinics and neighborhood events. The strips, available at no cost, can also be found in bars and spread out on street corners. People testing drugs mix a small amount with water and then dip a test strip into the liquid. The strip will change color if it identifies an adulterant.

“Nobody really knows what they’re getting whenever they’re getting stuff off of the street,” said Candy Kerr, a spokesperson for the coalition. “Having the test strips available for the general public gives them the option to move slower if they’re going to use whatever they’re going to use.”

But a new federal policy could make it harder for organizations such as Kerr’s to give out the test strips, and they’re worried that overdoses could increase. In late April, the Substance Abuse and Mental Health Services Administration banned the use of federal grants for distributing strips to the public and for some other harm reduction practices that have been credited with saving lives. Test strips have been used for to identify adulterants.

sent to local health departments and nonprofits that provide addiction services explained that the Trump administration believes those harm reduction practices “facilitate illicit drug use and are incompatible with Federal laws.”

According to the letter, grants from the Department of Health and Human Services also cannot be used for programs that support the use of clean needles or drug paraphernalia such as pipes, or to fund a type of that people can , so someone is aware and can call for help if they overdose. 

The Trump administration wants to focus more on other techniques, such as giving out naloxone, an overdose reversal drug available as a nasal spray, according to Emily Hilliard, an HHS spokesperson.

“It is critical that federal funding provided by the American taxpayer goes to effective, common-sense solutions that have been proven to save lives and keep people out of an endless cycle of addiction and moves them into a life of recovery,” she said.

The new policy does not prohibit federal funds from being used to purchase test strips for use by law enforcement officers, public health officials, EMTs, or other medical professionals.

That creates an important exception for government agencies that test drugs and send out on what adulterants are saturating the drug supply in certain locations.

Still, , who oversaw SAMHSA’s in the Biden and Trump administrations, says there is a substantial body of evidence giving test strips to people who use drugs can change behavior.

“There’s some people deciding not to use the substances, some people deciding to reduce, to use less, or take other types of precautions, including naloxone, and making sure that there are people around that can actually then help in the case of an overdose,” Olsen said.

Kerr said the best approach would be to continue to promote the use of test strips while also continuing to give out lifesaving medications like naloxone. She believes that working on all fronts has helped lead to Baltimore’s decline in overdose deaths, which more than 40% since 2023.

Under the new policy, nonprofits will still be able to hand out test strips, but they will have to find other funding for that work, which Kerr finds worrisome.

“We’ve been making these strides forward because we’ve had these things, because we’ve been funded,” she said. “We’re going to have to pull money from other places.”

To pay for the test strips, Kerr said, the Baltimore Harm Reduction Coalition will have to cut back on services such as giving out hygiene and wound care kits. But she said that option is better than risking another mass overdose in Baltimore — or allowing even just one preventable fatality.

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BALTIMORE — In March in a McDonald’s parking lot off a busy street, mental health clinician Michala Williams met a 38-year-old woman in a car.

“So, you called the police for help?” Williams asked the woman, who was sobbing uncontrollably and said she sometimes thinks about harming herself.

She told Williams she has children ranging from age 2 to 22, she was dealing with health issues, and that her fiancé had recently been jailed. She felt so overwhelmed she couldn’t eat.

The woman, who asked not to be named so that she could freely discuss her mental health, explained she’d tried to get help the previous month by driving to the hospital but got pulled over on the way because her car registration had expired.

“I don’t care if I get pulled over,” she said. “But I was saying, ‘I don’t know what to do. I just want to go to the hospital.’”

The officer arrested her for acting erratically, so instead of going to the hospital she went to jail.

“I had to sit inside of a cold cell. I couldn’t use the bathroom or anything,” the woman said.

On the day she met Williams, she’d decided to call 911. The dispatcher recognized the woman didn’t need a police response but instead needed one of Baltimore’s mobile crisis teams, which send a clinician and a peer counselor to meet people in mental health distress.

By the end of an hourlong conversation, Williams set the woman up with referrals to a psychiatrist, a therapist, legal help, and a case manager to determine if her child with autism was eligible for government services.

“She’s been through a lot of trauma, and no one is going to deny that,” Williams said. “But I now have to take all of that and decide, ‘OK, here’s steps 1, 2, and 3,’ because we got to find a little bit of sliver of something to give her some hope that there’s help out here.”

For years, the mobile crisis teams, which are overseen by , a nonprofit that acts as the city’s mental health department, have diverted calls from police to mental health professionals. However, the units have a limited scope, focused on people in mental health crises.

Now Baltimore is tapping into some of the roughly $400 million from opioid-related legal settlements to build out a broader service to operate around the clock and respond to other kinds of crises when police aren’t needed.

Baltimore logged to 911 in 2024, but tens of thousands of them didn’t require traditional emergency services, like police, firefighters, or EMTs, according to , an expert in community safety at Georgetown Law.

Instead, the calls were about, for example, a homeless person who fell asleep in a store, a person who seemed confused in a public park, and someone who was yelling at passersby on the street.

Such calls “don’t require a badge, a gun, and handcuffs to resolve,” Duckett said.

Often those people end up in jail instead of getting the help they need, he said. A study that when a non-law enforcement team responded to 911 calls in Durham, North Carolina, it resulted in fewer arrests than when police responded — especially for callers who were Black, men, or ages 25-39. Police responses can also lead to trauma for that person or a less satisfactory outcome than another community service response would produce, Duckett said. The idea behind the Baltimore mobile crisis teams — and the new service — is to find out what people in crisis may need and how to connect them to those resources instead of arresting them.

From 2021 to 2025, Baltimore’s homicide rate decreased by 60%, setting records for the drop in violence. But at the same time, drug overdoses made national records, as about 1,000 people here each year from 2020 to 2023.

In 2018, Baltimore opted out of a global settlement that other jurisdictions made with opioid makers and distributors and instead sued them independently. As the opioid-related lawsuits were settled, city officials decided that the settlement awards it receives must be spent on drug-related harms — or on services that help prevent addiction, such as housing support, healthcare, and education.

One seeks to directly address overdoses by placing boxes of the overdose reversal drug naloxone at every subway stop. Expanding 911 services is part of a larger strategy to beef up city services, with $15 million in settlement funds allocated so far, according to Sara Whaley, Baltimore’s director of overdose response. Whaley hopes the expansion will help the city think differently about how it responds to residents in crisis — regardless of why they’re calling 911.

She views the calls as an opportunity to help solve a problem rather than be punitive. “What are the wraparound services and support that can help prevent them from being involved in this, in that emergency system?” she said.

For example, the person falling asleep in a store may need connection to community housing. The goal is to reduce violence, get people proper resources, and avoid the cycle of incarcerating people dealing with poverty, addiction, and mental health.

, executive director of the Health Lab at the University of Chicago, of services like these. She said they offer peace of mind for callers that “they’re going to be met with the right response at the right time.”

“We also see responders themselves feeling like they have a better toolbox in their ability to pursue actual resolution to these calls,” she said.

To expand its system, Baltimore looked to cities — including Durham — that have adopted similar models to reroute callers who don’t need emergency responders.

Durham’s diversion program is called the , or HEART. The program estimates it has diverted more than 12,000 calls in four years. It said police backup was needed for only 0.02% of those calls and that response times have improved for all types of 911 calls.

Durham has of the HEART calls, showing that nonpolice responders in Durham have helped with everything from finding housing for a woman fleeing domestic violence to setting up medical appointments for a homeless veteran.

In one case, a hotel manager called 911 asking for help finding a blind man housing for the night, since the hotel didn’t have accessible rooms available. The HEART responders booked him a room and the next day provided a ride to meet with an organization that could help secure housing.

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Now, the same pain had returned — on the left.

This time, Rangel was in the U.S. and lacked health insurance. In 2019, he moved to Portland, Maine, where one of his daughters lives.

As a green-card holder, he qualified to purchase health insurance through the Affordable Care Act marketplace. But he quickly realized that the premiums for someone his age were beyond his budget. He decided to go without insurance, even though it had been a priority for him.

Instead, Rangel signed up for a plan at a concierge practice where patients pay as little as $70 a month for services, including unlimited office visits and minor procedures such as stitches and biopsies.

But when Rangel was diagnosed with a hernia, surgery became unavoidable. Ben Hagopian, his primary care physician, helped him compile a list of hospitals and surgical centers to consider. Rangel has a PhD in management, a field he pursued while serving in the navy in Venezuela. Armed with that knowledge and a naturally inquisitive mind, he began researching prices.

His efforts paid off when the bill came.

The Medical Service

Rangel had what is called an , which occurs when the contents of the abdomen bulge through a weak spot in the lower abdominal wall. The condition is relatively common, particularly among older adults.

In most cases, surgery is required to fix the muscle wall and can be performed . There are three main surgical approaches to repair an inguinal hernia: open, laparoscopic, and robot-assisted. Studies have shown that the three approaches have similarly low rates of hernia recurrence and are .

Rangel underwent an open repair, an approach often preferred by physicians for recurrent hernias. He said his operation lasted less than two hours, and he walked out of the surgical center shortly afterward.

The Bill

$2,900: The flat rate Rangel ultimately paid for his hernia repair at an outpatient surgery center in Maryland, including the surgeon’s fee and anesthesia. He said he also paid around $1,800 to travel to the surgery center from his home in Maine, including airfare, meals, and lodging for him and his wife.

The Billing Problem: No Insurance — But Time To Shop

Because Rangel did not have insurance, he had no protections from high costs — except time and his ability to shop for an acceptable price for his procedure.

Rangel’s first stop was a nonprofit hospital close to home. He scheduled a consultation with a surgeon with MaineHealth, the state’s largest health system, and received an estimate showing it would cost approximately $23,000 to repair his hernia laparoscopically.

Laparoscopic procedures generally cost more because surgeons use more advanced tools. Still, the average laparoscopic inguinal hernia repair costs nearly twice as much at a hospital as it does at an ambulatory surgery center for a patient , which pays $5,280 for the hospital-based option.

“I wasn’t going to mortgage my life just to have surgery and spend the next 30 years paying off the debt,” said Rangel, now 64.

So, he kept shopping. He considered a surgical center in Oklahoma that was far cheaper, but he ultimately ruled it out because it was so far away. He also explored traveling to Universidad de los Andes in Santiago, Chile, where another of his daughters lives. There, his hernia repair would have cost about $7,000, but once he added thousands of dollars in travel expenses, that option no longer made financial sense.

Gerard Anderson, a professor who analyzes healthcare spending at the Johns Hopkins Bloomberg School of Public Health, said patients without health insurance are often the ones hit hardest by wide price variations.

A closer look at any hospital bill helps explain why. “Every hospital is different,” he said, “but generally about half of the total charge is the facility fee,” a charge added to hospital care to help cover overhead costs.

Anderson said hospitals often mark up prices far more than smaller facilities do.

Medical billing researchers say the price gap between hospitals and ambulatory surgery centers partially reflects the higher overhead costs of operating a hospital.

Hagopian, Rangel’s physician, acknowledged that hospitals have higher administrative expenses. “But that doesn’t explain the high costs.”

MaineHealth declined to comment to Ñî¹óåú´«Ã½Ò•îl Health News, directing questions about the hospital-based procedure’s cost to Jeffrey Austin, president of the Maine Hospital Association.

Austin said that, unlike surgery centers, hospitals must absorb the costs of providing “money-losing” services, such as behavioral healthcare and care for Medicaid patients. He added that revenue generated by large hospitals in a health system supports other facilities, improving access to care.

Hospital prices, which can vary widely, are also driven by negotiations with insurers and market concentration. For uninsured patients, those list prices can become the starting point for negotiations — or the full amount owed.

Anderson noted that standardized payment rates exist for Medicare and Medicaid but not for most privately priced medical services. “In the private sector, providers can charge whatever they want.”

The Resolution

Rangel has another daughter in Argentina, a son in Venezuela, and other family in Spain. But he decided to stop looking around the globe for a good price, because he finally found what he was looking for in Maryland.

In April, he traveled to the Affordable Hernia Surgery center in Rockville, where he said “an efficient, well-coordinated system” guided him through the entire process.

“I received professional and very human care,” Rangel said. He was fully recovered within two weeks, as his surgeon predicted, he said.

The surgery center charged Rangel a flat fee for his hernia repair. The added travel expenses for the two-day trip with his wife went toward airline tickets, transportation, meals, and one night in a hotel.

Rangel said he paid about $4,700 total.

Alan Kravitz, the surgeon who performed Rangel’s operation, said the price difference uninsured patients face compared with insured patients is far from fair. “In the predatory and strategic world of U.S. healthcare pricing, uninsured patients generally get charged more than providers would accept from Medicare or commercial insurance.”

Kravitz then pulled out an estimate another patient had received for an inguinal hernia repair from a different large health system. The price: $37,000.

The Takeaway

Without insurance, many patients are on their own to negotiate.

“With the help of their primary physicians, patients can dig into prices and compare their options to avoid falling into medical debt,” Rangel said.

That approach, however, is most feasible for elective procedures with several surgical options offering comparable outcomes.

Patients facing medical emergencies do not have the luxury of comparing prices before seeking care, though many hospitals offer cash-pay discounts or charity care for those paying without insurance.

Billing analysts say patients who do have time to shop should look beyond cost alone. They recommend checking the quality of hospitals and surgical centers by reviewing publicly available ratings and patient reviews. that higher prices do not necessarily translate into a better quality of care, but it’s also important to select a reputable care provider.

Comparison shopping for medical care can be time-consuming. But for patients facing elective procedures, the effort can pay off — sometimes saving thousands of dollars.

“This was a learning experience for me,” Rangel said, “and I hope it will be for other people, too.”

Bill of the Month is a crowdsourced investigation by Ñî¹óåú´«Ã½Ò•îl Health News and that dissects and explains medical bills. Since 2018, this series has helped many patients and readers get their medical bills reduced, and it has been cited in statehouses, at the U.S. Capitol, and at the White House. Do you have a confusing or outrageous medical bill you want to share? Tell us about it!

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The federal government is capping the amount graduate students can borrow. The Department of Education says the new rules are designed to help curb student debt and pressure schools to lower tuition. But some loan experts fear those good intentions could leave many at the mercy of private lenders with higher interest rates. Saddling healthcare graduate students with pricier debt burdens can narrow their career choices.

Ñî¹óåú´«Ã½Ò•îl Health News correspondent Lauren Sausser joined WAMU’s Health Hub on July 22 to explain how the loan caps could make healthcare provider shortages worse or compromise the diversity of the workforce. Plus, she discusses how some states are pushing back against the new rules.

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Source: <a href=”; target=_”blank”>Centers for Medicare & Medicaid Services</a>

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Ñî¹óåú´«Ã½Ò•îl Health News will update this database as more states respond to emails and public records requests for their documents.

Note: Data collected as of Sept. 11, 2026. Ñî¹óåú´«Ã½Ò•îl Health News reporters searched state websites, requested documents, and filed public records requests. Ñî¹óåú´«Ã½Ò•îl Health News continues to collect documents.

Sources: Documents publicly posted online or released in response to Ñî¹óåú´«Ã½Ò•îl Health News requests; <a href=”; target=_”blank”>Centers for Medicare & Medicaid Services</a>

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Researchers this spring discovered in water in several coastal locations across New York’s Long Island, and town officials in the Hamptons vacation destination about the findings. in Florida have been infected this year, and in June urged people to take precautions.

About 1 in 5 people infected by the bacteria die, sometimes within a day or two of becoming ill, according to a Centers for Disease Control and Prevention . The bacteria, Vibrio vulnificus, can enter open wounds and cause tissue death and systemic sepsis.

“Many people with Vibrio vulnificus infection can get seriously ill and need intensive care or limb amputation,” the CDC says.

The risk of such public threats is mounting because climate change is expanding the territory of certain pathogens, but researchers say there’s another concern. The Trump administration has cut investments in programs and agencies that prevent, track, and respond to health hazards the federal government is now confronting.

Consider the , which can infest and kill livestock, in the U.S. in June. The U.S. Department of Agriculture lost in the first six months of 2025, according to a report from the USDA’s Office of Inspector General, and the agency’s winnowed-down inspection service is helping lead the response to the parasite.

Or malaria. A freeze on foreign aid disrupted international malaria prevention efforts, and warned that the U.S. is vulnerable to the reintroduction of the infectious disease.

And when it comes to Vibrio, the Trump administration began removing hundreds of deep-sea instruments that and yield data that helps that can allow the bacteria to flourish. the data to study Vibrio, which can when water temperatures and .

“It is important to track coastal temperatures, and that will relate to the distributions of Vibrio,” said Christopher Gobler, a professor in the School of Marine and Atmospheric Sciences at New York’s Stony Brook University, though he added that there are also other sources of data for researchers.

The Trump administration to dismantle the ocean monitoring system following bipartisan opposition to the effort in Congress.

But it’s still curtailing Vibrio surveillance. The life-threatening species that’s found in water can also sicken or kill people who eat contaminated seafood, such as infected with the bacteria. And infections from Vibrio vulnificus linked to consuming raw or undercooked shellfish as the presence of other pathogens in food decrease.

Since 1995, 10 states have participated in a federal program called the Foodborne Disease Active Disease Surveillance Network, or FoodNet. The program, with the CDC, monitors and track cases of foodborne illness caused by eight specific pathogens, including Vibrio. But last year the Trump administration to report on all but two pathogens, which means states no longer must report cases to the CDC.

Federal officials deny the moves are putting Americans at risk, saying the CDC continues to monitor these pathogens through other national surveillance systems to ensure ongoing visibility into disease trends and outbreaks.

Meanwhile, some former health leaders say the ramifications of sweeping cuts to health agencies and global prevention programs are becoming more apparent, undermining U.S. response efforts and initiatives that aim to safeguard the country from diseases.

“We are letting down defenses that were necessary to protect against microbial threats,” said Tom Frieden, a former CDC director who is now president and chief executive of Resolve to Save Lives, which works to stop preventable disease. “Instead of protecting, we’re doing the opposite.”

Do Limited Resources Mean Higher Risks?

The administration defends its actions, including massive layoffs at government health agencies, as necessary to eliminate wasteful spending.

The Department of Health and Human Services “is advancing the most significant public health reforms in a generation focused on prevention, accountability, scientific transparency, and better health outcomes,” agency spokesperson Emily Hilliard said in an email. “The Department is putting American families at the center of public health decision-making.”

Evidence suggests health risks are rising even as the Trump administration pulls back on resources for research, detection, and response.

Early in his administration, President Donald Trump opted to freeze and review work on global health programs. Trump’s cost-reduction effort, led by billionaire Elon Musk, also dismantled the U.S. Agency for International Development.

As a result, work was disrupted on the President’s Malaria Initiative, a George W. Bush-era program aimed at combating malaria in hard-hit countries that is credited with saving more than . USAID had in the program since 2005.

In addition, for global malaria programs were targeted for termination, , an independent research group that includes Ñî¹óåú´«Ã½Ò•îl Health News. The report didn’t include data on the total value of those specific malaria grants.

And the spending freeze halted research for more effective . The administration dissolved the CDC’s , shuffling staffers to other divisions and on the disease. HHS didn’t respond to an email asking how many staff members had been moved.

The life-threatening infectious disease spread by mosquitos was in 1951. But the CDC’s updated guidance on investigating domestic cases that “the country remains susceptible to malaria reintroduction.”

resulted in 10 people in Arkansas, Florida, Maryland, and Texas becoming infected locally, and mosquitoes capable of transmitting malaria are found throughout most of the country.

“The majority of U.S. residents lack protective immunity against malaria, rendering persons susceptible to severe illness and death if infected,” the CDC said in the May report.

HHS declined to comment on any of the specific cuts but said the CDC works with domestic and international partners to reduce the burden of malaria and prevent its reestablishment in the U.S.

It’s not just cuts to funding that are raising health risks, say researchers and former health officials. Significant staffing cuts mean there are fewer people working on preventing or tracking diseases, they say.

“Yes, the programs have been cut in terms of reduction in staff, but I would say, equally important, you have reductions in expertise,” said Jeanne Marrazzo, CEO of the Infectious Diseases Society of America. “It’s irreplaceable.”

Screwworm is a species of parasitic blowfly producing larvae that can enter open wounds and devour tissue, infecting people and animals. Like malaria, it has long been eliminated in the U.S., and disease monitoring efforts have been key to keeping it out.

The cuts at USAID stripped from the United Nations’ , which focuses on global food security and the such as screwworm.

In the wake of the administration’s cost-cutting initiatives, more than 20,000 employees are gone from the USDA, which develops and implements agriculture policy and provides resources to producers of livestock vulnerable to the parasite.

On June 3, the first new case of screwworm in the U.S. was confirmed, and there have now been infected with parasite. An expanding outbreak could devastate the cattle industry.

Agriculture Secretary Brooke Rollins during the Trump administration have led to screwworm’s return. Instead, she has , saying it didn’t do enough to prevent reintroduction into the U.S. Rollins said on X that “” under the previous Biden administration was partly to blame, providing no evidence.

The USDA did not respond to an email seeking comment.

Ashish Jha, a doctor who served as the White House covid response coordinator during the Biden administration, said there’s no truth to the claim that immigrants lacking legal status have brought screwworm into the U.S.

Investments in tracking and combating diseases have suffered, he said, because HHS Secretary Robert F. Kennedy Jr. is prioritizing the prevention of chronic disease at the expense of efforts to curtail infectious disease.

“Who doesn’t want a healthier country? It sounds great, but it’s kind of a bait and switch,” Jha said. “They’re doing the opposite. They’re letting down our defenses that are necessary to protect us against microbial threats.”

HHS’ Hilliard disagreed, saying Kennedy’s actions are making the agency more effective.

“Secretary Kennedy is delivering that reform by streamlining operations, reducing redundancies, and returning HHS to pre-pandemic staffing levels,” she said. “At the same time, he is dismantling policies and incentives that contributed to a nationwide chronic disease epidemic.”

Surveillance Gaps

Jha pointed to Trump’s decision to withdraw the U.S. from the World Health Organization, which coordinates global responses to public health issues and crises, and to the dismantling of USAID.

The pullback has had implications for the Ebola outbreak in the Democratic Republic of Congo, aid workers say.

Without the same amount of funding from USAID, the International Rescue Committee, which partners to deliver front-line health, surveillance, and outbreak preparedness activities in Congo, .

“Funding cuts have left the region dangerously exposed,” Heather Reoch Kerr, IRC’s country director for Congo, said .

The outbreak is roughly 7,000 miles away, but its spread has the , with stepped-up surveillance and entry restrictions on airline travelers. Federal officials have said that the dismantling of USAID hasn’t hampered detection or response.

“The U.S. government continues to move aggressively to contain the Ebola outbreak at its source in order to protect the American people and prevent further international spread,” the State Department said .

Trump’s decision to disengage with the WHO was criticized by following a hantavirus outbreak this spring on a cruise ship that had set sail from Argentina. the , and they questioned why the president suggested creating a costly new rather than sticking with the WHO — especially, they say, when the U.S. is cutting back on the surveillance programs it already has.

The federal government has tracked Vibrio cases as part of the FoodNet program, which aims in part to identify and curtail outbreaks. Reporting on cases of Vibrio is now optional.

Close to half of the cases of foodborne illness caused by Vibrio vulnificus have , and some within 24 hours after consumption of tainted shellfish such as raw oysters. The bacteria can multiply rapidly, leading to septic shock and blistering skin lesions. The pathogen is becoming to antibiotics.

The CDC estimates that of Vibrio infection occur annually, with infections from the most severe species, Vibrio vulnificus, steadily rising. , that species has led to 429 cases due to infections of open wounds and 135 cases from contaminated food.

“The more surveillance you get, you can connect the dots,” said Bill Marler, a Seattle-area food safety lawyer. “If a tree falls in the woods and you don’t hear it, did the tree fall? It’s easier not to report diseases. Then they can say, ‘Look at how safe our food supply is.’”

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He had been targeted by a drive-by shooter in Jacksonville, Florida, and hospitalized with two gunshot wounds. During his weeklong hospitalization, he said, a physician assistant changed the course of his life by visiting his hospital bed each day and warning him that Black men with gunshot wounds often end up paralyzed — or worse.

“I used to run the streets, you know, on the wrong sides of the track,” Pinckney said. “He made me promise that I would never come into his ER that way again. That was the last conversation we had, right before I was discharged.”

His goal since then has been to become a physician assistant. Pinckney, who spent most of his career working for New York City’s Department of Sanitation and as an Army Reserve medic, recently took a step toward achieving it. In May, he graduated with departmental honors from Lehman College with a Bachelor of Science degree.

After moving from New York to Prince George’s County, Maryland, he’d planned on applying for physician assistant school this year. But now, he’s worried his dream may be thwarted by new student loan rules.

Starting July 1, the amount of money graduate students will be allowed to borrow from the federal government . The new student loan limits are part of the GOP’s tax-and-spending legislation known as the One Big Beautiful Bill Act, which President Donald Trump signed into law last year.

The caps are intended to curb the cost of higher education and student loan debt, according to the Trump administration.

But critics widely agree the new limits are too low, especially for students allowed to borrow only $20,500 a year in federal loans due to the law’s controversial definition of a “professional degree.” On June 24, a federal judge temporarily blocked the Department of Education from enforcing that definition. Still, for many students, the new caps won’t cover the combined cost of tuition, housing, and living expenses.

This could leave hundreds of thousands of students who borrow money for graduate school each year at the mercy of private lenders with higher interest rates and fewer repayment options.

Some experts and students also worry that the limits will threaten efforts to diversify the healthcare workforce by deterring minorities and people from low-income households from applying to graduate programs. A drop in incoming students could worsen existing rural and primary care shortages, they argue.

Many politicians and loan experts have acknowledged that the cost of higher education needs to be addressed. But the new federal loan limits are “just not going to achieve that goal,” said Todd Pickard, president of the American Academy of Physician Associates, one of several organizations that have sued the Department of Education over the rules.

“It’d be like if you had a hangnail and I cut your whole arm off instead of just taking care of your hangnail,” Pickard said. “The treatment doesn’t match the problem.”

‘A Rock and a Hard Place’

Students working toward what the law describes as “professional degrees” — including trainee doctors, dentists, pharmacists, and chiropractors — will be allowed to borrow up to $200,000 total, and no more than $50,000 a year.

Meanwhile, the median cost of attending a public medical school is nearly $300,000 over four years, while the median cost of a private medical school education exceeds $400,000, according to the Association of American Medical Colleges.

The caps were set even lower for those pursuing other “graduate” degrees, who face a $100,000 borrowing limit for federal loans over the course of their degree programs. The annual limit for this category of students is only $20,500. Students pursuing physical therapy, physician assistant, and nursing degrees were originally included in this group. But according to new guidance issued by the Department of Education on June 29, some of these students will at least temporarily be able to borrow up to the higher limit, .

The Department of Education, which has been sued by clinician trade groups and about two dozen states over the new rules, did not respond to questions for this article.

As the law was written, a physician assistant student who completed their degree within the average two to three years would not have been eligible to borrow the full $100,000. Meanwhile, physician assistants typically start their careers with an average debt of $112,000, meaning some could be forced to finance their education with higher-interest private loans.

“I feel like I’m between a rock and a hard place,” said Olivia Trull, 24, who is scheduled to begin the physician assistant program at Northwest University in Kirkland, Washington, this summer. The 28-month program costs $137,000, with about $62,000 in tuition and fees estimated for the first year, she said. That doesn’t include living expenses.

Before the court order, Trull said she qualified for the maximum annual allotment under the new rules of $20,500 in federal loans during her first year of graduate school. The balance would need to be financed through a private lender.

She anticipated she would need up to $100,000 in private loans to finance her graduate degree and would face loan payments of more than $3,000 a month when she was done.

“I have to actually sit down and have a conversation with myself,” Trull said, to consider “if I want to be drowning in debt for the next 10 years of my life.” One private bank offered her a loan with an interest rate of nearly 14%, she said.

Pinckney, who said he finished his undergraduate degree with about $10,000 in federal student loan debt, said some of his friends who have already applied for private student loans have been quoted interest rates as high as 13%. Meanwhile, interest rates for federal loans for graduate students, which are set annually, are currently about 8-9%. Federal loans also offer more flexible repayment options than private loans typically do.

In May, 25 states and the District of Columbia against the Department of Education over the new rules. The complaint described the law’s “professional degree” definition as “arbitrary and capricious.”

In a separate filed in June, the American Academy of Physician Associates and the PA Education Association alleged that the new rules deny students the loan amounts needed to attend physician assistant schools. They argue that PA students should be able to access the higher loan limits available to students in medical school and other professional degree programs. (While “physician assistant” and “physician associate” typically refer to the same role, the AAPA in 2021 because of “concern that ‘assistant’ does not reflect the important role of PAs in delivering high-quality healthcare to patients.”)

Meanwhile, Trump administration officials have contended the cost of graduate school is too high across the board. Education Secretary Linda McMahon, speaking before a House committee in May about the new limits, said, “It is our overall goal to bring down the cost of college and education.”

Indeed, some experts acknowledge that the new limits may be helpful in bringing down costs. The federal Grad PLUS loan program, established by Congress 20 years ago, did not cap the amount graduate students could borrow in federal loans. That program was eliminated in the One Big Beautiful Bill Act.

“There is considerable evidence that people borrowed more than they really needed to go to school,” said Sandy Baum, a higher education economist and a senior fellow at the Urban Institute.

Already, some graduate programs have lowered tuition prices, Baum said. In May, for example, the it would lower the cost of its MBA programs by tens of thousands of dollars to fall below the new federal lending thresholds.

And yet Baum doesn’t anticipate many other schools will follow suit.

“I don’t think we’re going to see some dramatic decline in prices,” she said. “I think some programs could close down because they can’t manage.”

‘Tears Have Been Shed’

The new lending limits will also disproportionately affect Black students, Baum said, because they have historically borrowed more than white and Hispanic students.

For some students who borrowed money to finance their undergraduate degrees, the new limits will hit especially hard. Under the new rules, they will be subject to a lifetime limit of $257,000 in federal student loans.

“There will be students who can’t enroll,” Baum said.

Andrei Robu, 26, a medical student at the Medical University of South Carolina, leads the Financial Literacy Interest Group on the Charleston campus. He said many of his peers are worried that the lending limits will make the student body less diverse.

He is also concerned that, because the demand for acceptance into medical school is already so high, schools could prioritize entrance for students from wealthy backgrounds and “still fill up their classes.”

“That’s just not what we want in our physician workforce,” said Robu, who isn’t subject to the new rules as a current student. “We want to represent the population of the country at large.”

Jasmine Vasquez, 26, who has been accepted into the physician assistant program at South College in Atlanta, decided to defer her enrollment until 2027, partly to see if her financing options change. She is worried about taking on too much debt from a private bank.

“Tears have been shed multiple times,” said Vasquez, who is due to give birth in September. “It’s nothing that’s within my control.”

Betsy Mayotte, president of the Institute for Student Loan Advisors, expects the new rules will force some graduates into bankruptcy when they can’t afford to repay private loans.

First, though, she expects enrollment numbers to drop and some graduate programs to close because they can’t recruit enough students. Completion rates will also drop, she expects, as students run into federal loan limits partway through their degree programs.

Beyond that, she predicts healthcare graduates will seek jobs in high-paying specialties, exacerbating shortages in rural and underserved communities.

“They’re going to go where they can make the most money,” Mayotte said.

Pinckney said he is “not really sure” what the future holds. He paid for most of his undergraduate education by working while he was in school, but that’s typically not possible for full-time physician assistant students.

He has considered applying to a biomedical science graduate program instead, which he estimated would cost about $30,000 — an amount that’s “a lot more doable,” he said. It would allow him to potentially work in a lab or in pharmaceuticals, he said. It’s still aligned with medicine, he said, but it wouldn’t help him realize his goal of working with patients.

“Maybe this thing will blow over,” he said of the new federal loan limits. In the meantime, he’s holding out hope.

“If I can influence one person’s life, that would be my way of paying him forward for what he did,” he said, referring to the physician assistant who inspired him back in 1999. “It’s very hard to pivot from that dream.”

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“All nonspeakers above the age of 5 should be given the opportunity,” typed Bonker, who is 28 and cannot talk. Her mother, Virginia Breen, held a wireless keyboard for her. They sat on a hotel patio before an April 27 meeting with a senior aide to Health and Human Services Secretary Robert F. Kennedy Jr.

“We are misunderstood and underestimated,” Bonker typed, occasionally humming or lightly groaning as she considered where to place a slender forefinger on the keyboard.

Assisted spelling is used to help nonverbal people communicate by pointing to letters on boards or using keyboards with physical help from another person.

Supporters say assisted spelling has improved the lives of thousands of people with autism, such as Bonker, and they have powerful allies. Kennedy appointed Bonker and another autistic “speller,” as they call themselves, to a 20-member autism panel including several parents and others who have attributed autism to childhood vaccinations.

At the reconfigured panel’s first public session on April 28, three other members said their nonspeaking adult children were learning to communicate through spelling. The panel issued a resolution with  stating that “robust” communications programs are essential for autistic people. Bonker has urged the Department of Health and Human Services to support training in assisted spelling for those who want it.

But leading for , as well as those representing and , that these methods — premised on the idea that people with autism have the normal range of cognitive powers but are imprisoned in malfunctioning bodies — are flawed or fraudulent.

Other, validated methods enable nonspeakers to communicate through digital and analog pictures and letter boards. But assisted spelling isn’t autonomous communication, critics say: Consciously or not, the board holder may be influencing or responsible for the typed or pointed-at words — as with a Ouija board.

For many parents in Kennedy’s Make America Healthy Again community, the spelling controversy is angrily ringing the same bells as the notion that vaccines cause autism — which they refuse to consider debunked. As some people see it: Established medicine damaged them with vaccines and now refuses to accept a helpful treatment.

People with autism are “trapped in bodies that have betrayed them because the medical establishment has betrayed them,” said Louis Conte, who has a child with autism, in a of a Kennedy-allied MAHA publication.

By limiting access to spelling, “you are not just limiting expression, you are erasing identity,” said Katie Sweeney, the mother of an autistic adult who is affiliated with an anti-vaccine , at the autism panel meeting.

Mainstream autism experts and advocates in March convened the Independent Autism Coordinating Committee as a counter to Kennedy’s panel. At the new group’s meeting, one member spoke out against the spelling methods.

“In this underfunded disability environment, I don’t want a single penny diverted to debunked interventions like spelling,” said , a senior lecturer in history at the University of Pennsylvania and an who described her 27-year-old son as “profoundly autistic.”

It’s not only a waste of time, she said later in an interview, but “people subjected to spelling are not given access to evidence-based education. Every interaction turns someone like my son into a puppet, and I find that very objectionable.”

A Patchwork of Perspectives

The universe of autistic people, their parents, researchers, advocates, and service providers is a broad, acrimonious spectrum. Some say that vaccines or chemical exposures caused a massive increase in autism, others that diagnostic changes account for most of the increase. Some seek mainstream or alternative treatments, some demand classroom inclusion, and others want residential treatment. Some people with autism say it’s a difference, not a disability.

“When I tell the parents of a young child they have autism, it’s a tragedy,” said Audrey Brumback, a child neurologist at Dell Medical School at the University of Texas-Austin. “When I give the same diagnosis to a teenager, it’s good news. It means, ‘There’s nothing wrong with you; you’re just autistic.’”

Scientific medicine has failed to deliver good treatments for autism. After four decades of concerted research, “the results have for the most part been very disappointing,” said David Mandell, a professor of psychiatry and pediatrics at the University of Pennsylvania.

Severely autistic children — those requiring round-the-clock care with ailments like epilepsy and generally lacking in verbal language — account for of all U.S. autism diagnoses. Caring for them may mean dropping careers and spending vast sums on therapy. “They ought to spell special education with a dollar sign,” said Tracy Simmons, whose 17-year-old son, Noah, has autism.

Many parents of autistic children have tried vitamins and diets that exclude wheat, soy, or dairy. Some have turned to hyperbaric oxygen chambers, others to pig hormones to repair damage spuriously attributed to measles-mumps-rubella vaccines, and infusions of metal-leaching chemicals to remove traces of heavy metals in childhood shots. Recent regimens include camel’s milk, broccoli extract, and stem cell injections obtained at great expense in Panama and India.

In September, the White House touted leucovorin, used in some cancer care and for an ultra-rare genetic condition. Marty Makary, then-commissioner of the FDA, said the drug could help 50% to 60% of kids with autism.

There’s little evidence behind any of these treatments, Brumback said. Many parents try multiple remedies at once; if a child’s condition improves, it’s hard to tell what worked — or whether the child simply grew out of a problem.

Noah the Speller

During a Zoom session in which he typed on a keyboard held by his mother, Noah Simmons wrote glowingly about the world opened to him by two years of learning to spell and type.

“Im a new person. I have friends, I write, climbing,” he typed. “Conversation. I can have one. I have a say. Im human now.”

Later, at an indoor climbing center in Gaithersburg, Maryland, Noah scrambled nearly to the top of the wall before he slipped. He glided down the rope and slapped a high five with his climbing instructor as his mother approached. She carried a laminated sheet with the alphabet on it.

Tracy Simmons held the paper while Noah stabbed at the letters one by one, ending with a flourishing swipe at the exclamation mark: “Im going to crush it again!”

There, and at a later keyboard session at home, Noah seemed in control. But when Tracy stopped offering verbal prompts and encouragement, or stopped holding the board, Noah often got lost and signaled a need for help.

Tracy Simmons acknowledges that whoever holds the board could be steering a speller’s words. Despite his climbing prowess, Noah lacks fine motor skills, is anxious, and has trouble controlling his body, she said.

“He’s working on becoming an independent typer. He can do it short amounts of time,” she said. “But at times he gets overwhelmed.”

The method used by Noah and his mother came into use in the United States in the early 1990s. At first, trainers guided the arms or hands of the spellers as they pointed to a letter board. The idea was that the intelligence or literacy of severely autistic people was trapped in bodies they couldn’t control. They needed help physically learning to spell, first with a pencil or finger pointing at stenciled or printed letters, and eventually by typing on a keyboard.

Within a few years, however, dozens of experiments had shown that the facilitators, not the autistic people, were doing the spelling. A that the spellers could identify words or objects without their facilitators.

In addition, the technique has resulted in — sometimes in the autistic person’s life skeptical of the spelling process.

Next came the Rapid Prompting Method, devised by Soma Mukhopadhyay, an Indian mother of a boy with profound autism, who brought her system to the United States in 2001. Elizabeth Vosseller, a speech pathologist in Herndon, Virginia, launched a nearly identical method, Spelling to Communicate. In both, the facilitator, not the speller, holds the letter board. But each method relies on prompts.

Mukhopadhyay and Vosseller, who did not respond to requests for comment, have each declined to submit their systems to the kind of testing that disproved facilitated communication. Bonker said calls for such tests show a lack of respect for the disabled.

Asked why, after 23 years as a speller, she couldn’t communicate alone or without her mother holding the board, Bonker typed, “I can do it in certain environments that don’t include interviews with strangers.” Severely autistic people need coaches to help control their anxiety, Breen said.

Another star of the speller world, Woody Brown, spoke through his mother with Jenna Bush Hager on the Today show on April 1. The Browns were promoting his novel, Upward Bound, which became an immediate New York Times bestseller after its March release. During the segment, Mary Brown spoke in complete sentences that she said came from Woody, but the letters he typed, as far as the program’s viewers could see, did not correspond to her words and often looked like gibberish.

This raised questions about how Woody Brown could be the author of what critics described as a brilliant, sensitive novel. They pointed out that Mary Brown has worked as a Hollywood script analyst. The Browns did not respond to efforts to reach them for comment.

“Spellers” are best known to the public through the success of The Telepathy Tapes, which briefly unseated The Joe Rogan Experience as the country’s most popular podcast early last year. In The Telepathy Tapes’ first season, people with profound autism were allegedly revealed as clairvoyant superhumans.

The evidence for their telepathic abilities was produced through spelling. The host showed spellers and facilitators two things, and the speller, with the facilitator present, typed out what the facilitator saw. Viewers had to wonder whether this was evidence of telepathy or confirmation of what critics have said all along: that the facilitator is the one controlling the words, often by feeding the speller subtle cues.

Bonker said she appreciated the Telepathy Tapes’ host for including her nonprofit group’s information on its website. As for telepathic skills, “I believe nonspeakers have many gifts,” she said. “And I believe what they say.”

The debate over spelling is playing out in boards of education and courtrooms, where parents of autistic children seek aid for their children’s spelling lessons.

In New York state in March, anti-vaccine on state Sen. Patricia Fahy, the Democratic chair of the disabilities committee, after she inserted language into a disability rights bill requiring that payments go to “verified” communication methods that assured patient autonomy.

Vikram Jaswal, a University of Virginia psychologist who works with spellers, said he’s seen people with severe autism who can type independently, though only a handful have that ability out of the couple of hundred spellers he’s met. More research is needed to figure out who can best benefit from the technique, he said.

Tracy Simmons believes in the method, and so does her son — assuming he’s in control of what he types.

On a recent morning, Tracy read aloud a beautiful escape-from-Alcatraz story she said Noah had written with her help and that of his spelling trainer. “He writes all the time in his head,” she said, but it could take years for her son to consistently type independently.

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