Kaiser Health News

It’s been nearly three months since the U.S. government announced an outbreak of the bird flu virus on dairy farms. The World Health Organization considers the virus a public health concern because of its potential to cause a pandemic, yet the U.S. has tested only about 45 people across the country.

“We’re flying blind,” said Jennifer Nuzzo, director of the Pandemic Center at the Brown University School of Public Health. With so few tests run, she said, it’s impossible to know how many farmworkers have been infected, or how serious the disease is. A lack of testing means the country might not notice if the virus begins to spread between people — the gateway to another pandemic.

“We’d like to be doing more testing. There’s no doubt about that,” said Nirav Shah, principal deputy director of the Centers for Disease Control and Prevention. The CDC’s bird flu test is the only one the Food and Drug Administration has authorized for use right now.

Shah said the agency has distributed these tests to about 100 public health labs in states. “We’ve got roughly a million available now,” he said, “and expect 1.2 million more in the next two months.”

But Nuzzo and other researchers are concerned because the CDC and public health labs aren’t generally where doctors order tests from. That job tends to be done by major clinical laboratories run by companies and universities, which lack authorization for bird flu testing.

Clinical labs say they’re ‘stuck on the bench’

As the outbreak grows — with at least 114 herds infected in 12 states as of June 18 — researchers said the CDC and FDA are not moving fast enough to remove barriers that block clinical labs from testing. In one case, the diagnostics company Neelyx Labs was on hold with a query for more than a month.

“Clinical labs are part of the nation’s public health system,” said Alex Greninger, assistant director of the University of Washington Medicine Clinical Virology Laboratory. “Pull us into the game. We’re stuck on the bench.”

The CDC recognized the need for clinical labs in a June 10 memo. It calls on industry to develop tests for the H5 strain of bird flu virus, the one circulating among dairy cattle. “The limited availability and accessibility of diagnostic tests for Influenza A(H5) poses several pain points,” the CDC wrote. The points include a shortage of tests if demand spikes.

Researchers, including former CDC director Tom Frieden and Anthony Fauci, who led the nation’s response to COVID, cite testing failures as a key reason the U.S. fared so poorly with COVID. Had COVID tests been widely available in early 2020, they say, the U.S. could have detected many cases before they turned into outbreaks that prompted business shutdowns and cost lives.

In an article published this month, Nuzzo and a group of colleagues noted that the problem wasn’t testing capability but a failure to deploy that capability swiftly. The U.S. reported excess mortality eight times as high as other countries with advanced labs and other technological advantages.

A COVID test vetted by the WHO was available by mid-January 2020. Rather than use it, the United States stuck to its own multistage process, which took several months. Namely, the CDC develops its own test then sends it to local public health labs. Eventually, the FDA authorizes tests from clinical diagnostic labs that serve hospital systems, which must then scale up their operations. That took time, and people died amid outbreaks at nursing homes and prisons, waiting on test results.

In contrast, South Korea immediately rolled out testing through private sector laboratories, allowing it to keep schools and businesses open. “They said, ‘Gear up, guys; we’re going to need a ton of tests,’” said Frieden, now president of the public health organization Resolve to Save Lives. “You need to get commercials in the game.”

Nuzzo and her colleagues describe a step-by-step strategy for rolling out testing in health emergencies, in response to mistakes made obvious by COVID. But in this bird flu outbreak, the U.S. is weeks behind that playbook.

Ample testing is critical for two reasons. First, people need to know if they’re infected so that they can be quickly treated, Nuzzo said. Over the past two decades, roughly half of about 900 people around the globe known to have gotten the bird flu died from it.

Although the three farmworkers diagnosed with the disease this year in the United States had only mild symptoms, like a runny nose and inflamed eyes, others may not be so lucky. The flu treatment Tamiflu works only when given soon after symptoms start.

The CDC and local health departments have tried to boost bird flu testing among farmworkers, asking them to be tested if they feel sick. Farmworker advocates list several reasons why their outreach efforts are failing. The outreach might not be in the languages the farmworkers speak, for example, or address such concerns as a loss of employment.

If people who live and work around farms simply see a doctor when they or their children fall ill, those cases could be missed if the doctors send samples to their usual clinical laboratories. The CDC has asked doctors to send samples from people with flu symptoms who have exposure to livestock or poultry to public health labs.

“If you work on a farm with an outbreak and you’re worried about your welfare, you can get tested,” Shah said. But sending samples to public health departments requires knowledge, time, and effort.

“I really worry about a testing scheme in which busy clinicians need to figure this out,” Nuzzo said.

Labs ask for ‘right to reference’ but federal agencies’ response is slow

The other reason to involve clinical laboratories is so the nation can ramp up testing if the bird flu is suddenly detected among people who didn’t catch it from cattle. There’s no evidence the virus has started to spread among people, but that could change in the coming months as it evolves.

The fastest way to get clinical labs involved, Greninger said, is to allow them to use a test the FDA has already authorized: the CDC’s bird flu test. On April 16 the CDC opened up that possibility by offering royalty-free licenses for components of its bird flu tests to accredited labs.

Several commercial labs asked for licenses. “We want to get prepared before things get crazy,” said Shyam Saladi, chief executive officer of the diagnostics company Neelyx Labs, which offered COVID and mpox tests during shortages in those outbreaks. His experience over the past two months reveals the types of barriers that prevent labs from moving swiftly.

In email exchanges with the CDC, shared with KFF Health News, Saladi specifies the labs’ desire for licenses relevant to the CDC’s test, as well as a “right to reference” the CDC’s data in its application for FDA authorization.

That “right to reference” makes it easier for one company to use a test developed by another. It allows the new group to skip certain analyses conducted by the original maker, by telling the FDA to look at data in the original FDA application. This was commonplace with COVID tests at the peak of the pandemic.

At first, the CDC appeared eager to cooperate. “A right of reference to the data should be available,” Jonathan Motley, a patent specialist at the CDC, wrote in an email to Saladi on April 24. Over the next few weeks, the CDC sent him information about transferring its licenses to the company, and about the test, which prompted Neelyx’s researchers to buy testing components and try out the CDC’s process on their equipment.

But Saladi grew increasingly anxious about the ability to reference the CDC’s data in the company’s FDA application. “Do you have an update with respect to the right of reference?” he asked the CDC on May 13. “If there are any potential sticking points with respect to this, would you mind letting us know please?”

He asked several more times in the following weeks, as the number of herds infected with the bird flu ticked upward and more cases among farmworkers were announced. “Given that it is May 24 and the outbreak has only expanded, can CDC provide a date by which it plans to respond?” Saladi wrote.

The CDC eventually signed a licensing agreement with Neelyx but informed Saladi that it would not, in fact, provide the reference. Without that, Saladi said, he could not move forward with the CDC’s test — at least not without more material from the agency. “It’s really frustrating,” he said. “We thought they really intended to support the development of these tests in case they are needed.”

Shah, from the CDC, said test manufacturers should generate their own data to prove that they’re using the CDC’s test correctly. “We don’t have a shortage such that we need to cut corners,” he said. “Quality reigns supreme.”

The CDC has given seven companies, including Neelyx, licenses for its tests — although none have been cleared to use them by the FDA. Only one of those companies asked for the right of reference, Shah said. The labs may be assisted by additional material that the agency is developing now, to allow them to complete the analyses — even without the reference.

“This should have happened sooner,” Saladi told KFF Health News when he was told about the CDC’s pending additional material. “There’s been no communication about this.”

Flashback to early COVID response

Greninger said the delays and confusion are reminiscent of the early months of COVID, when federal agencies prioritized caution over speed. Test accuracy is important, he said, but excessive vetting can cause harm in a fast-moving outbreak like this one. “The CDC should be trying to open this up to labs with national reach and a good reputation,” he said. “I fall on the side of allowing labs to get ready — that’s a no-brainer.”

Clinical laboratories have also begun to develop their own tests from scratch. But researchers said they’re moving cautiously because of a recent FDA rule that gives the agency more oversight of lab-developed tests, lengthening the pathway to approval. In an email to KFF Health News, FDA press officer Janell Goodwin said the rule’s enforcement will occur gradually.

However, Susan Van Meter, president of the American Clinical Laboratory Association, a trade group whose members include the nation’s largest commercial diagnostic labs, said companies need more clarity: “It’s slowing things down because it’s adding to the confusion about what is allowable.”

Creating tests for the bird flu is already a risky bet because demand is uncertain. It’s not clear whether this outbreak in cattle will trigger an epidemic or fizzle out. In addition to issues with the CDC and FDA, clinical laboratories are trying to figure out whether health insurers or the government will pay for bird flu tests.

These wrinkles will be smoothed eventually. Until then, the vanishingly slim numbers of people tested, along with the lack of testing in cattle, may draw criticism from other parts of the world.

“Think about our judgment of China’s transparency at the start of COVID,” Nuzzo said. “The current situation undermines America’s standing in the world.”

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

Vincent Wasney and his fiancée, Sarah Eberlein, had never visited the ocean. They’d never even been on a plane. But when they bought their first home in Saginaw, Michigan, in 2018, their real estate agent gifted them tickets for a Royal Caribbean cruise.

After two years of delays due to the coronavirus pandemic, they set sail in December 2022.

The couple chose a cruise destined for the Bahamas in part because it included a trip to CocoCay, a private island accessible to Royal Caribbean passengers that featured a water park, balloon rides, and an excursion swimming with pigs.

It was on that day on CocoCay when Wasney, 31, started feeling off, he said.

The next morning, as the couple made plans in their cabin for the last full day of the trip, Wasney made a pained noise. Eberlein saw him having a seizure in bed, with blood coming out of his mouth from biting his tongue. She opened their door to find help and happened upon another guest, who roused his wife, an emergency room physician.

Wasney was able to climb into a wheelchair brought by the ship’s medical crew to take him down to the medical facility, where he was given anticonvulsants and fluids and monitored before being released.

Vincent had had seizures in the past, starting about ten years ago, but it had been a while since his last one. Imaging back then showed no tumors, and doctors concluded he was likely epileptic, he said. He took medicine initially, but after two years without another seizure, he said his doctors took him off the medicine to avoid liver damage.

Wasney had a second seizure on the ship a few hours later, back in his cabin. This time he stopped breathing, and Eberlein remembered his lips being so purple, they almost looked black. Again, she ran to find help but, in her haste, locked herself out. By the time the ship’s medical team got into the cabin, Wasney was breathing again but had broken blood vessels along his chest and neck that he later said resembled tiger stripes.

Wasney was in the ship’s medical center when he had a third seizure — a grand mal, which typically causes a loss of consciousness and violent muscle contractions. By then, the ship was close enough to port that Wasney could be evacuated by rescue boat. He was put on a stretcher to be lowered by ropes off the side of the ship, with Eberlein climbing down a rope ladder to join him.

But before they disembarked, the bill came.

The patient: Vincent Wasney, 31, who was uninsured at the time.

Medical services: General and enhanced observation, a blood test, anticonvulsant medicine, and a fee for services performed outside the medical facility.

Service provider: Independence of the Seas Medical Center, the on-ship medical facility on the cruise ship operated by Royal Caribbean International.

Total bill: $2,500.22.

What gives: As part of Royal Caribbean’s guest terms, cruise passengers “agree to pay in full” all expenses incurred on board by the end of the cruise, including those related to medical care. In addition, Royal Caribbean does not accept “land-based” health insurance plans.

Wasney said he was surprised to learn that, along with other charges like wireless internet, Royal Caribbean required he pay his medical bills before exiting the ship — even though he was being evacuated urgently.

“Are we being held hostage at this point?” Eberlein remembered asking. “Because, obviously, if he’s had three seizures in 10 hours, it’s an issue.”

Wasney said he has little memory of being on the ship after his first seizure — seizures often leave victims groggy and disoriented for a few hours afterward.

But he certainly remembers being shown a bill, the bulk of which was the $2,500.22 in medical charges, while waiting for the rescue boat.

Still groggy, Wasney recalled saying he couldn’t afford that and a cruise employee responding: “How much can you pay?”

They drained their bank accounts, including money saved for their next house payment, and maxed out Wasney’s credit card but were still about $1,000 short, he said.

Ultimately, they were allowed to leave the ship. He later learned his card was overdrafted to cover the shortfall, he said.

Royal Caribbean International did not respond to multiple inquiries from KFF Health News.

Once on land, in Florida, Wasney was taken by ambulance to the emergency room at Broward Health Medical Center in Fort Lauderdale, where he incurred thousands of dollars more in medical expenses.

He still isn’t entirely sure what caused the seizures.

On the ship he was told it could have been extreme dehydration — and he said he does remember being extra thirsty on CocoCay. He also has mused whether trying escargot for the first time the night before could have played a role. Eberlein’s mother is convinced the episode was connected to swimming with pigs, he said. And not to be discounted, Eberlein accidentally broke a pocket mirror three days before their trip.

Wasney, who works in a stone shop, was uninsured when they set sail. He said that one month before they embarked on their voyage, he finally felt he could afford the health plan offered through his employer and signed up, but the plan didn’t start until January 2023, after their return.

They also lacked travel insurance. As inexperienced travelers, Wasney said, they thought it was for lost luggage and canceled trips, not unexpected medical expenses. And because the cruise was a gift, they were never prompted to buy coverage, which often happens when tickets are purchased.

The resolution: Wasney said the couple returned to Saginaw with essentially no money in their bank account, several thousand dollars of medical debt, and no idea how they would cover their mortgage payment. Because he was uninsured at the time of the cruise, Wasney did not try to collect reimbursement for the cruise bill from his new health plan when his coverage began weeks later.

The couple set up payment plans to cover the medical bills for Wasney’s care after leaving the ship: one each with two doctors he saw at Broward Health, who billed separately from the hospital, and one with the ambulance company. He also made payments on a bill with Broward Health itself. Those plans do not charge interest.

But Broward Health said Wasney missed two payments to the hospital, and that bill was ultimately sent to collections.

In a statement, Broward Health spokesperson Nina Levine said Wasney’s bill was reduced by 73% because he was uninsured.

“We do everything in our power to provide the best care with the least financial impact, but also cannot stress enough the importance of taking advantage of private and Affordable Care Act health insurance plans, as well as travel insurance, to lower risks associated with unplanned medical issues,” she said.

The couple was able to make their house payment with $2,690 they raised through a GoFundMe campaign that Wasney set up. Wasney said a lot of that help came from family as well as friends he met playing disc golf, a sport he picked up during the pandemic.

“A bunch of people came through for us,” Wasney said, still moved to tears by the generosity. “But there’s still the hospital bill.”

The takeaway: Billing practices differ by cruise line, but Joe Scott, chair of the cruise ship medicine section of the American College of Emergency Physicians, said medical charges are typically added to a cruise passenger’s onboard account, which must be paid before leaving the ship. Individuals can then submit receipts to their insurers for possible reimbursement.

He recommended that those planning to take a cruise purchase travel insurance that specifically covers their trips. “This will facilitate reimbursement if they do incur charges and potentially cover a costly medical evacuation if needed,” Scott said.

Royal Caribbean suggests that passengers who receive onboard care submit their paid bills to their health insurer for possible reimbursement. Many health plans do not cover medical services received on cruise ships, however. Medicare will sometimes cover medically necessary health care services on cruise ships, but not if the ship is more than six hours away from a U.S. port.

Travel insurance can be designed to address lots of out-of-town mishaps, like lost baggage or even transportation and lodging for a loved one to visit if a traveler is hospitalized.

Travel medical insurance, as well as plans that offer “emergency evacuation and repatriation,” are two types that can specifically assist with medical emergencies. Such plans can be purchased individually. Credit cards may offer travel medical insurance among their benefits, as well.

But travel insurance plans come with limitations. For instance, they may not cover care associated with preexisting conditions or what the plans consider “risky” activities, such as rock climbing. Some plans also require that travelers file first with their primary health insurance before seeking reimbursement from travel insurance.

As with other insurance, be sure to read the fine print and understand how reimbursement works.

Wasney said that’s what they plan to do before their next Royal Caribbean cruise. They’d like to go back to the Bahamas on basically the same trip, he said — there’s a lot about CocoCay they didn’t get to explore.

Emmarie Huetteman of KFF Health News edited the digital story, and Taunya English of KFF Health News edited the audio story. NPR’s Will Stone edited the audio and digital story.

KFF Health News, formerly known as Kaiser Health News (KHN), is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism.

Sara England was putting together Ghostbusters costumes for Halloween when she noticed her baby wasn’t doing well.

Her 3-month-old son, Amari Vaca, had undergone open-heart surgery two months before, so she called his cardiologist, who recommended getting him checked out. England assigned Amari’s grandparents to trick-or-treat duty with his three older siblings and headed to the local emergency room.

Once they arrived at Natividad Medical Center in Salinas, California, she said doctors could see Amari was struggling to breathe and told her that he needed specialized care immediately, from whichever of two major hospitals in the region had an opening first.

Even as they talked, Amari was declining rapidly, his mother said. Doctors put a tube down his throat and used a bag to manually push air into his lungs for over an hour to keep his oxygen levels up until he was stable enough to switch to a ventilator.

According to England, late that night, when doctors said the baby was stable enough to travel, his medical team told England that a bed had opened up at the University of California-San Francisco Medical Center and staffers there were ready to receive him.

She, her son, and an EMT boarded a small plane around midnight. Ground ambulances carried them between the hospitals and airports.

Amari was diagnosed with respiratory syncytial virus, or RSV, and spent three weeks in the hospital before recovering and returning home.

Then the bill came.

The patient: Amari Vaca, now 1, who was covered by a Cigna policy sponsored by his father’s employer at the time.

Medical services: An 86-mile air-ambulance flight from Salinas to San Francisco.

Service Providers: Reach Medical Holdings, which is part of Global Medical Response, an industry giant backed by private equity investors. Global Medical Response operates in all 50 states and has said it has a total of 498 helicopters and airplanes.

Total bill: $97,599. Cigna declined to cover any part of the bill.

What gives: Legal safeguards are in place to protect patients from big bills for some out-of-network care, including air-ambulance rides.

Medical billing experts said the No Surprises Act, a federal law enacted in 2022, could have protected Amari’s family from receiving the $97,000 “balance bill,” leaving the insurer and the air-ambulance provider to determine fair payment according to the law. But the protections apply only to care that health plans determine is “medically necessary” — and insurers get to define what that means in each case.

According to its coverage denial letter, Cigna determined that Amari’s air-ambulance ride was not medically necessary. The insurer cited its reasoning: He could have taken a ground ambulance instead of a plane to cover the nearly 100 roadway miles between Salinas and San Francisco.

“I thought there must have been a mistake,” England said. “There’s no way we can pay this. Is this a real thing?”

In the letter, Cigna said Amari’s records did not show that other methods of transportation were “medically contraindicated or not feasible.” The health plan also noted the absence of documentation that he could not be reached by a ground ambulance for pickup or that a ground ambulance would be unfeasible because of “great distances or other obstacles.”

Lastly, it said records did not show a ground ambulance “would impede timely and appropriate medical care.”

When KFF Health News asked Cigna what records were referenced when making this decision, a spokesperson declined to respond.

Caitlin Donovan, a spokesperson for the National Patient Advocate Foundation, said that even though Amari’s bill isn’t technically in violation of the No Surprises Act, the situation is exactly what the law was designed to avoid.

“What they’re basically saying is that the parents should have opted against the advice of the physician,” Donovan said. “That’s insane. I know ‘medical necessity’ is this nebulous term, but it seems like it’s becoming a catch-all for turning down patients.”

On Feb. 5, the National Association of Emergency Medical Services Physicians said that since the No Surprises Act was enacted two years ago, it has seen a jump in claim denials based on “lack of medical necessity,” predominantly for air-ambulance transports between facilities.

In a letter to federal health officials, the group cited reasons commonly given for inappropriate medical-necessity denials observed by some of its 2,000 members, such as “the patient should have been taken elsewhere” or “the patient could have been transported by ground ambulance.”

The association urged the government to require that health plans presume medical necessity for inter-facility air transports ordered by a physician at a hospital, subject to a retrospective review.

Such decisions are often “made under dire circumstances — when a hospital is not capable of caring for or stabilizing a particular patient or lacks the clinical resources to stabilize a patient with a certain clinical diagnosis,” the group’s president, José Cabañas, wrote in the letter. “Clinical determinations made by a referring physician (or another qualified medical professional) should not be second-guessed by a plan.”

Patricia Kelmar, a health policy expert and senior director with the U.S. Public Interest Research Groups, noted, however, that hospitals could familiarize themselves with local health plans, for example, and establish protocol, so that before they call an air ambulance, they know if there are in-network alternatives and, if not, what items the plan needs to justify the claim and provide payment.

“The hospitals who live and breathe and work in our communities should be considering the individuals who come to them every day,” Kelmar said. “I understand in emergency situations, you generally have a limited amount of time, but, in most situations, you should be familiar with the plans so you can work within the confines of the patient’s health insurance.”

England said Cigna’s denial particularly upset her.

“As parents, we did not make any of the decisions other than to say, ‘yes, we’ll do that,'” she said, “And…I don’t know how else it could have gone.”

The resolution: England twice appealed the air-ambulance charge to the insurer, but both times Cigna rejected the claim, maintaining that “medical necessity” had not been established.

The final step of the appeals process is an external review, in which a third party evaluates the case. England said staff members at Natividad Medical Center in Salinas — which arranged Amari’s transport — declined to write an appeal letter on his behalf, explaining to her that doing so is against the facility’s policy.

Using her son’s medical records, which the Natividad staff provided, England said she is writing a letter herself to assert why the air ambulance was medically necessary.

Andrea Rosenberg, spokesperson for Natividad Medical Center, said the hospital focuses on “maintaining the highest standards of health care and patient well-being.” Despite receiving a waiver from England authorizing the medical center to discuss Amari’s case, she did not respond to questions from KFF Health News, citing privacy issues.

A Cigna spokesperson told KFF Health News that the insurer has in-network alternatives to the out-of-network ambulance provider, but — despite receiving a waiver authorizing Cigna to discuss Amari’s case — declined to answer other questions.

“It is disappointing that CALSTAR/REACH is attempting to collect this egregious balance from the patient’s family,” the Cigna spokesperson, Justine Sessions, said in an email, referring to the air-ambulance provider. “We are working diligently to try to resolve this for the family.”

On March 13, weeks after being contacted by KFF Health News, England said, a Cigna representative contacted her and offered assistance with her final appeal, the one reviewed by a third-party. The representative also told her the insurer had attempted to contact the ambulance provider but had been unable to resolve the bill with them.

Global Medical Response, the ambulance provider, declined to comment on the record.

England said she and her husband have set aside two hours each week for him to take care of their four kids while she shuts herself in her room and makes calls about their medical bills.

“It’s just another stress,” she said. “Another thing to get in the way of us being able to enjoy our family.”

The takeaway: Kelmar said she encourages patients to appeal bills that seem inaccurate. Even if the plan denies it internally, push forward to an external review so someone outside the company has a chance to review, she said.

In the case of “medical necessity” denials, Kelmar recommended patients work with the medical provider to provide more information to the insurance company to underscore why an emergency transport was required.

Doctors who write a letter or make a call to a patient’s insurer explaining a decision can also ask for a “peer-to-peer review,” meaning they would discuss the case with a medical expert in their field.

Kelmar said patients with employer-sponsored health plans can ask their employer’s human resources department to advocate for them with the health plan. It’s in the employers’ best interest since they often pay a lot for these health plans, she said.

No matter what, Kelmar said, patients shouldn’t let fear stop them from appealing a medical bill. Patients who appeal have a high likelihood of winning, she said.

Patients with government health coverage can further appeal insurance denials by filing a complaint with the Centers for Medicare & Medicaid Services. Those who believe they have received an inappropriate bill from an out-of-network provider can call the No Surprises Act help desk at 1-800-985-3059.

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. KFF Health News is the publisher of California Healthline, an editorially independent service of the California Health Care Foundation.

Emmarie Huetteman of KFF Health News edited the digital story, and Taunya English of KFF Health News edited the audio story. NPR’s Will Stone edited the audio and digital story.

Copyright 2024 KFF Health News. To see more, visit KFF Health News.

Debra Prichard was a retired factory worker who was careful with her money, including what she spent on medical care, said her daughter, Alicia Wieberg. “She was the kind of person who didn’t go to the doctor for anything.”

That ended last year, when the rural Tennessee resident suffered a devastating stroke and several aneurysms. She twice was rushed from her local hospital to Vanderbilt University Medical Center in Nashville, 79 miles away, where she was treated by brain specialists. She died Oct. 31 at age 70.

One of Prichard’s trips to the Nashville hospital was via helicopter ambulance. Wieberg said she had heard such flights could be pricey, but she didn’t realize how extraordinary the charge would be — or how her mother’s skimping on Medicare coverage could leave the family on the hook.

Then the bill came.

The patient: Debra Prichard, who had Medicare Part A insurance before she died.

Medical service: An air-ambulance flight to Vanderbilt University Medical Center.

Service provider: Med-Trans Corp., a medical transportation service that is part of Global Medical Response, an industry giant backed by private equity investors. The larger company operates in all 50 states and says it has a total of 498 helicopters and airplanes.

Total bill: $81,739.40, none of which was covered by insurance.

What gives: Sky-high bills from air ambulance providers have sparked complaints and federal action in recent years.

For patients with private insurance coverage, the 2020 No Surprises Act bars air-ambulance companies from billing people more than they would pay if the service were considered “in-network” with their health insurers. For patients with public coverage, such as Medicare or Medicaid, the government sets payment rates at much lower levels than the companies charge.

But Prichard had opted out of the portion of Medicare that covers ambulance services.

That meant when the bill arrived less than two weeks after her death, her estate was expected to pay the full air-ambulance fee of nearly $82,000. The main assets are 12 acres of land and her home in Decherd, Tenn., where she lived 48 years and raised two children. The bill for a single helicopter ride could eat up roughly a third of the estate’s value, said Wieberg, who is executor.

The family’s predicament stems from the complicated nature of Medicare coverage.

Prichard was enrolled only in Medicare Part A, which is free to most Americans 65 or older. That section of the federal insurance program covers inpatient care, and it paid most of her hospital bills, her daughter said.

But Prichard declined other Medicare coverage, including Part B, which handles such things as doctor visits, outpatient treatment, and ambulance rides. Her daughter suspects she skipped that coverage to avoid the premiums most recipients pay, which currently are about $175 a month.

Loren Adler, a health economist for the Brookings Institution who studies ambulance bills, estimated the maximum charge that Medicare would have allowed for Prichard’s flight would have been less than $10,000 if she’d signed up for Part B. The patient’s share of that would have been less than $2,000. Her estate might have owed nothing if she’d also purchased supplemental “Medigap” coverage, as many Medicare members do to cover things like co-insurance, he said.

Nicole Michel, a spokesperson for Global Medical Response, the ambulance provider, agreed with Adler’s estimate that Medicare would have limited the charge for the flight to less than $10,000. But she said the federal program’s payment rates don’t cover the cost of providing air ambulance services.

“Our patient advocacy team is actively engaged with Ms. Wieberg’s attorney to determine if there was any other applicable medical coverage on the date of service that we could bill to,” Michel wrote in an email to KFF Health News. “If not, we are fully committed to working with Ms. Wieberg, as we do with all our patients, to find an equitable solution.”

The resolution: In mid-February, Wieberg said the company had not offered to reduce the bill.

Wieberg said she and the attorney handling her mother’s estate both contacted the company, seeking a reduction in the bill. She said she also contacted Medicare officials, filled out a form on the No Surprises Act website, and filed a complaint with Tennessee regulators who oversee ambulance services. She said she was notified Feb. 12 that the company filed a legal claim against the estate for the entire amount.

Wieberg said other health care providers, including ground ambulance services and the Vanderbilt hospital, wound up waiving several thousand dollars in unpaid fees for services they provided to Prichard that are normally covered by Medicare Part B.

But as it stands, Prichard’s estate owes about $81,740 to the air-ambulance company.

The takeaway: People who are eligible for Medicare are encouraged to sign up for Part B, unless they have private health insurance through an employer or spouse.

“If someone with Medicare finds that they are having difficulty paying the Medicare Part B premiums, there are resources available to help compare Medicare coverage choices and learn about options to help pay for Medicare costs,” Meena Seshamani, director of the federal Center for Medicare, said in an email to KFF Health News.

She noted that every state offers free counseling to help people navigate Medicare.

In Tennessee, that counseling is offered by the State Health Insurance Assistance Program. Its director, Lori Galbreath, told KFF Health News she wishes more seniors would discuss their health coverage options with trained counselors like hers.

“Every Medicare recipient’s experience is different,” she said. “We can look at their different situations and give them an unbiased view of what their next best steps could be.”

Counselors advise that many people with modest incomes enroll in a Medicare Savings Program, which can cover their Part B premiums. In 2023, Tennessee residents could qualify for such assistance if they made less than $1,660 monthly as a single person or $2,239 as a married couple. Many people also could obtain help with other out-of-pocket expenses, such as copays for medical services.

Wieberg, who lives in Missouri, has been preparing the family home for sale.

She said the struggle over her mother’s air-ambulance bill makes her wonder why Medicare is split into pieces, with free coverage for inpatient care under Part A, but premiums for coverage of other crucial services under Part B.

“Anybody past the age of 70 is likely going to need both,” she said. “And so why make it a decision of what you can afford or not afford, or what you think you’re going to use or not use?”

KFF Health News, formerly known as Kaiser Health News (KHN), is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism.

Emmarie Huetteman of KFF Health News edited the digital story, and Taunya English of KFF Health News edited the audio story. NPR’s Will Stone edited the audio and digital story.

Copyright 2024 KFF Health News. To see more, visit KFF Health News.

In 2016, Richard Timmins went to a free informational seminar to learn more about Medicare coverage.

“I listened to the insurance agent, and basically, he really promoted Medicare Advantage,” Timmins says. The agent described less expensive and broader coverage offered by the plans, which are funded largely by the government but administered by private insurance companies.

For Timmins, who is now 76, it made economic sense then to sign up. And his decision was great, for a while.

Then, three years ago, he noticed a lesion on his right earlobe.

“I have a family history of melanoma. And so, I was kind of tuned in to that and thinking about that,” Timmins says of the growth, which doctors later diagnosed as malignant melanoma. “It started to grow and started to become rather painful.”

Timmins, though, discovered that his enrollment in a Premera Blue Cross Medicare Advantage plan would mean a limited network of doctors and the potential need for preapproval, or prior authorization, from the insurer before getting care. The experience, he says, made getting care more difficult, and now he wants to switch back to traditional, government-administered Medicare.

But he can’t. And he’s not alone.

“I have very little control over my actual medical care,” he says, adding that he now advises friends not to sign up for the private plans. “I think that people are not understanding what Medicare Advantage is all about.”

Enrollment in Medicare Advantage plans has grown substantially in the past few decades, enticing more than half of eligible people, primarily those 65 or older, with low premium costs and perks like dental and vision insurance. And as the private plans’ share of the Medicare patient pie has ballooned to 30.8 million people, so too have concerns about the insurers’ aggressive sales tactics and misleading coverage claims.

Enrollees, like Timmins, who sign on when they are healthy can find themselves trapped as they grow older and sicker.

“It’s one of those things that people might like them on the front end because of their low to zero premiums and if they are getting a couple of these extra benefits — the vision, dental, that kind of thing,” says Christine Huberty, a lead benefit specialist supervising attorney for the Greater Wisconsin Agency on Aging Resources.

“But it’s when they actually need to use it for these bigger issues,” Huberty says, “that’s when people realize, ‘Oh no, this isn’t going to help me at all.'”

Medicare pays private insurers a fixed amount per Medicare Advantage enrollee and in many cases also pays out bonuses, which the insurers can use to provide supplemental benefits. Huberty says those extra benefits work as an incentive to “get people to join the plan” but that the plans then “restrict the access to so many services and coverage for the bigger stuff.”

David Meyers, assistant professor of health services, policy and practice at the Brown University School of Public Health, analyzed a decade of Medicare Advantage enrollment and found that about 50% of beneficiaries — rural and urban — left their contract by the end of five years. Most of those enrollees switched to another Medicare Advantage plan rather than traditional Medicare.

In the study, Meyers and his co-authors muse that switching plans could be a positive sign of a free marketplace but that it could also signal “unmeasured discontent” with Medicare Advantage.

“The problem is that once you get into Medicare Advantage, if you have a couple of chronic conditions and you want to leave Medicare Advantage, even if Medicare Advantage isn’t meeting your needs, you might not have any ability to switch back to traditional Medicare,” Meyers says.

Traditional Medicare can be too expensive for beneficiaries switching back from Medicare Advantage, he says. In traditional Medicare, enrollees pay a monthly premium and, after reaching a deductible, in most cases are expected to pay 20% of the cost of each nonhospital service or item they use. And there is no limit on how much an enrollee may have to pay as part of that 20% coinsurance if they end up using a lot of care, Meyers says.

To limit what they spend out-of-pocket, traditional Medicare enrollees typically sign up for supplemental insurance, such as employer coverage, or a private Medigap policy. If they are low income, Medicaid may provide that supplemental coverage.

But, Meyers says, there’s a catch: While beneficiaries who enrolled first in traditional Medicare are guaranteed to qualify for a Medigap policy without pricing based on their medical history, Medigap insurers can deny coverage to beneficiaries transferring from Medicare Advantage plans or can base their prices on medical underwriting.

Only four states — Connecticut, Maine, Massachusetts and New York — prohibit insurers from denying a Medigap policy if the enrollee has preexisting conditions such as diabetes or heart disease.

Paul Ginsburg is a former commissioner on the Medicare Payment Advisory Commission, also known as MedPAC. It’s a legislative branch agency that advises Congress on the Medicare program. He says the inability of enrollees to easily switch between Medicare Advantage and traditional Medicare during open enrollment periods is “a real concern in our system — it shouldn’t be that way.”

The federal government offers specific enrollment periods every year for switching plans. During Medicare’s open enrollment period, from Oct. 15 to Dec. 7, enrollees can switch out of their private plans to traditional, government-administered Medicare.

Medicare Advantage enrollees can also switch plans or transfer to traditional Medicare during another open enrollment period, from Jan. 1 to March 31.

“There are a lot of people that say, ‘Hey, I’d love to come back, but I can’t get Medigap anymore or I’ll have to just pay a lot more,'” says Ginsburg, who is now a professor of health policy at the University of Southern California.

Timmins is one of those people. The retired veterinarian lives in a rural community on Whidbey Island, just north of Seattle. It’s a rugged, idyllic landscape and a popular place for second homes, hiking and the arts. But it’s also a bit remote.

While it’s typically harder to find doctors in rural areas, Timmins says he believes his Premera Blue Cross plan made it more challenging to get care for a variety of reasons, including the difficulty of finding and getting in to see specialists.

Nearly half of Medicare Advantage plan directories contained inaccurate information on what providers were available, according to the most recent federal review. Beginning in 2024, new or expanding Medicare Advantage plans must demonstrate compliance with federal network expectations or their applications could be denied.

Amanda Lansford, a Premera Blue Cross spokesperson, declined to comment on Timmins’ case. She says the plan meets federal network adequacy requirements as well as travel time and distance standards “to ensure members are not experiencing undue burdens when seeking care.”

Traditional Medicare allows beneficiaries to go to nearly any doctor or hospital in the U.S., and in most cases enrollees do not need approval to get services.

Timmins, who recently finished immunotherapy, says he doesn’t think he would be approved for a Medigap policy, “because of my health issue.” And if he were to get into one, Timmins says, it would likely be too expensive.

For now, Timmins said, he is staying with his Medicare Advantage plan.

“I’m getting older. More stuff is going to happen.”

There is also a chance, Timmins says, that his cancer could resurface: “I’m very aware of my mortality.”

KFF Health News, formerly known as Kaiser Health News (KHN), is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling and journalism.

Copyright 2024 KFF Health News. To see more, visit KFF Health News.

BOZEMAN, Mont. — Behind American Indian Hall on the Montana State University campus, ancient life is growing.

Six-foot-tall corn plants tower over large green squash and black-and-yellow sunflowers. Around the perimeter, stalks of sweetgrass grow. The seeds for some of these plants grew for millennia in Native Americans’ gardens along the upper Missouri River.

It’s one of several Native American ancestral gardens growing in the Bozeman area, totaling about an acre. Though small, the garden is part of a larger, multifaceted effort around the country to promote “food sovereignty” for reservations and tribal members off reservation, and to reclaim aspects of Native American food and culture that flourished in North America for thousands of years before the arrival of European settlers.

Restoring bison to reservations, developing community food gardens with ancestral seeds, understanding and collecting wild fruits and vegetables, and learning how to cook tasty meals with traditional ingredients are all part of the movement.

“We are learning to care for plant knowledge, growing Indigenous gardens, cultivating ancestral seeds, really old seeds from our relatives the Mandan, Hidatsa, and Arikara: corn, beans, squash, and sunflowers,” said Jill Falcon Ramaker, an assistant professor of community nutrition and sustainable food systems at Montana State. She is a member of the Turtle Mountain Band of Anishinaabe.

“A lot of what we are doing here at the university is cultural knowledge regeneration,” she said.

But it also has a very practical application: to provide healthier, cheaper, and more reliable food supplies for reservations, which are often a long way from supermarkets, and where processed foods have helped produce an epidemic of diabetes and heart disease.

Many reservations are food deserts where prices are high and processed food is often easier to come by than fresh food. The Montana Food Distribution Study, a 2020 paper funded by the U.S. Department of Agriculture, found that the median cost in the state of a collection of items typically purchased at a grocery store is 23% higher on a reservation than off.

“With food sovereignty we are looking at the ability to put that healthy food and ancestral foods which we used to survive for thousands of years, putting those foods back on the table,” Ramaker said. What that means exactly can vary by region, depending on the traditional food sources, from wild rice in the Midwest to salmon on the Pacific coast.

Central to the effort, especially in Montana, are bison, also referred to as buffalo. In 2014, 13 Native nations from eight reservations in the U.S. and Canada came together to sign the Buffalo Treaty, an agreement to return bison to 6.3 million acres that sought “to welcome BUFFALO to once again live among us as CREATOR intended by doing everything within our means so WE and BUFFALO will once again live together to nurture each other culturally and spiritually.”

Nearly a decade later, dozens of tribes have buffalo herds, including all seven reservations in Montana.

The buffalo-centered food system was a success for thousands of years, according to Ramaker. It wasn’t a hand-to-mouth existence, she wrote in an article for Montana State, but a “knowledge of a vast landscape, including an intimate understanding of animals, plants, season, and climate, passed down for millennia and retained as a matter of life and death.”

Ramaker directs both the Montana Indigenous Food Sovereignty Initiative and a regional program, the Buffalo Nations Food Systems Initiative, or BNFSI — a collaboration with the Native American Studies Department and College of Education, Health and Human Development at Montana State.

With bison meat at the center of the efforts, the BNFSI is working to bring other foods from the northern Plains Native American diet in line with modern palates.

The BNFSI has received a $5 million grant from the U.S. Department of Agriculture to carry out that work, in partnership with Nueta Hidatsa Sahnish College in New Town, N.D.

Life on reservations is partly to blame for many Native people eating processed foods, Ramaker said. Food aid from the federal government, known as the Commodity Supplemental Food Program, has long been shipped to reservations in the form of boxes full of packaged foods.

“We were forced onto the reservations, where there was replacement food sent by the government — white flour, white sugar, canned meat, salt, and baking powder,” she said.

Processed foods contribute to chronic inflammation, which in turn leads to heart disease, cancer, and diabetes, which occurs at three times the rate in Native Americans as it does in white people.

Studies show that people’s mental and physical health declines when they consume a processed food diet. “In the last decade there’s a growing amount of research on the impact of good nutrition on suicide ideation, attempts, and completion,” said KayAnn Miller, co-executive director of the Montana Partnership to End Childhood Hunger in Bozeman, who is also involved with the BNFSI.

All Native American reservations in Montana now have community gardens, and there are at least eight different gardens on the Flathead Reservation north of Missoula, home to the Confederated Salish and Kootenai Tribes. The tribe is teaching members to raise vegetables, some of it made into soup that is delivered to tribal elders. This year members grew 5 tons of produce to be given away.

Ancestral seeds are part of the effort. Each year the BNFSI sends out 200 packets of seeds for ancestral crops to Indigenous people in Montana.

Creating foods that appeal to contemporary tastes is critical to the project. The BNFSI is working with Sean Sherman, the “Sioux Chef,” to turn corn, meat, and other Native foods into appealing dishes.

Sherman founded the award-winning Owamni restaurant in Minneapolis and in 2020 opened the Indigenous Food Lab, through his nonprofit, North American Traditional Indigenous Food Systems. The lab, in downtown Minneapolis, is also a restaurant and an education and training center that creates dishes using only Indigenous foods from across the country — no dairy, cane sugar, wheat flour, beef, chicken, or other ingredients from what he calls the colonizers.

“We’re not cooking like it’s 1491,” Sherman said last year on “Fresh Air,” referring to the period before European colonization. “We’re not a museum piece or something like that. We’re trying to evolve the food into the future, using as much of the knowledge from our ancestors that we can understand and just applying it to the modern world.”

Among his signature dishes are bison pot roast with hominy and roast turkey with a berry-mint sauce and black walnuts.

In consultation with Sherman, Montana State University is building the country’s second Indigenous food lab, which will be housed in a new $29 million building with a state-of-the-art kitchen, Ramaker said. It will open next year and expand the ongoing work creating recipes, holding cooking workshops, feeding MSU’s more than 800 Native students, and preparing cooking videos.

Angelina Toineeta, who is Crow, is studying the BNFSI at Montana State as part of her major in agriculture. “Growing these gardens really stuck out to me,” she said. “Native American agriculture is something we’ve lost over the years, and I want to help bring that back.”

KFF Health News, formerly known as Kaiser Health News (KHN), is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism.

Copyright 2023 KFF Health News. To see more, visit KFF Health News.