Before his double-lung transplant, Tom Saputo thought he had anticipated every possible outcome.

But after the surgery, he wasn’t prepared for the price of the 27-mile air ambulance flight from a hospital in Thousand Oaks, Calif., to UCLA Medical Center — which cost more than the lifesaving operation itself.

“When you look at the bills side by side, and you see that the helicopter costs more than the surgeon who does the lung transplant, it’s ridiculous,” said Dana Saputo, Tom’s wife. “I don’t think anybody would believe me if I said that and didn’t show them the evidence.”

“Balance billing,” better known as surprise billing, occurs when a patient receives care from a medical provider outside of his insurance plan’s network, and then the provider bills the patient for the amount insurance didn’t cover. These bills can soar into the tens of thousands of dollars.

Surprise bills hit an estimated 1 in 6 insured Americans after a stay in the hospital. And the air ambulance industry, with its private equity backing, high upfront costs and frequent out-of-network status, is among the worst offenders.

Congress is considering legislation aimed at addressing surprise bills and air ambulance charges. And some states, including Wyoming and California, are trying to address the problem even though there are limits to what they can do, because air ambulances are primarily regulated by federal aviation authorities.

That regulatory approach leaves patients vulnerable.

Saputo, 63, was diagnosed in 2016 with idiopathic pulmonary fibrosis, a progressive disease that scars lung tissue and makes it increasingly difficult to breathe.

The retired Thousand Oaks graphic designer got on the list for a double-lung transplant at UCLA and started the preapproval process with his insurance company, Anthem Blue Cross, should organs become available.

But before a transplant could be arranged, he suddenly stopped breathing on the evening of July 7, 2018. His wife called 911.

A ground ambulance drove the couple to Los Robles Regional Medical Center, 15 minutes from their house, where Saputo spent four days in the intensive care unit before his doctors sent him to UCLA by air ambulance.

He was on the brink of death, but just in time, the hospital received a pair of donor lungs. They were a perfect match, and two days after arriving at UCLA, Saputo was breathing normally again.

“It was a miracle,” he said.

Saputo’s recovery was difficult, and problems like infections put him back in the hospital for observation. But the most unexpected setback was financial.

When Saputo opened a letter from Anthem, he discovered the helicopter company, which was out of his network, had charged the insurance company $51,282 for the flight. Saputo was responsible for the portion his insurance didn’t cover: $11,524.79.

By contrast, the charges from the day of his transplant surgery totaled $40,575 — including $31,605 for his surgeon — and were fully covered by Anthem.

Saputo appealed to Anthem twice about the ambulance charges. Meanwhile, the helicopter company, Mercy Air, kept calling him after he left the hospital, asking him to negotiate with his insurance company. It even called his adult daughter in San Francisco to ask how the Saputos planned to pay the bill.

“I have no idea how they even got her name or her number,” Saputo said.

Mercy Air is a subsidiary of Air Methods, which operates in 48 states and is owned by the private equity firm American Securities.

Air Methods acknowledged by email that it had put Saputo through a “long and arduous process.” The company contacted his daughter because it tried every phone number associated with him, said company spokesman Doug Flanders. But Air Methods laid the blame at the feet of his insurer.

Anthem spokeswoman Leslie Porras said the blame doesn’t lie with insurers, but with air ambulance companies that remain out of network so they can charge patients “whatever they choose.”

“The ability to bill the consumer for the balance provides little incentive for some air ambulance providers to contract with us,” Porras said.

(In January, six months after Saputo’s surgery, Anthem entered into a contract with the air ambulance company to make it an in-network provider, she said.)

Air Methods forgave Saputo’s bill in August after ABC’s Good Morning America, working with Kaiser Health News, inquired about his case. Air Methods said it was an internal decision to zero out his bill.

Other patients usually aren’t as lucky.

The median cost of a helicopter air ambulance flight was $36,400 in 2017, an increase of more than 60% from the median price in 2012, according to a Government Accountability Office analysis. Two-thirds of the flights in 2017 were out of network, the report found.

The air ambulance industry justifies these charges by pointing out that the bulk of its business — transporting patients covered by the public insurance programs Medicare and Medicaid — is underfunded by the government.

The median cost to transport a Medicare patient by air ambulance is about $10,200, according to an industry study. However, air ambulance companies are reimbursed a median rate of $6,500 per flight.

“The remaining 30% of patients with private health insurance end up paying over 70% of the costs,” said Flanders of Air Methods.

But critics argue the real problem is market saturation. While the number of air ambulance helicopters in the U.S. has increased — rising more than 10% from 2010 to 2014 — the number of flights hasn’t, which means air ambulance companies seek to raise prices on each ride.

“This is a great opportunity to make money, because patients don’t ask for the price before they receive the service,” said Ge Bai, an associate professor of accounting and health policy at Johns Hopkins University.

That’s what frustrated the Saputos the most about their air ambulance charge: There was no way they could have shopped around to compare costs beforehand.

“There’s just no possible way that a customer of insurance can navigate that process,” Dana Saputo said.

Bai also criticized the practice of charging privately insured patients exorbitant amounts to make up for losses from Medicaid and Medicare patients.

“If they feel that Medicare and Medicaid is paying too little, they should lobby the government to get a higher reimbursement,” Bai said.

In California, Democratic Gov. Gavin Newsom signed a bill in early October that will limit how much some privately insured patients will pay for air ambulance rides. Effective next year, the law, by state Assemblyman Tim Grayson, will cap out-of-pocket costs at patients’ in-network amounts, even if the air ambulance company is out of network.

Wyoming is moving to treat the industry like a public utility, allowing the state’s Medicaid program to cover all of its residents’ air ambulance trips and then bill patients’ health insurance plans. The state would then cap out-of-pocket costs at 2% of the patient’s income or $5,000, whichever is less. Wyoming needs permission from the federal government to proceed.

Ultimately, though, state authority is limited because the federal Airline Deregulation Act of 1978 prohibits states from enacting price laws on air carriers.

Congress is considering several bipartisan bills on surprise billing. One measure by Sens. Lamar Alexander, R-Tenn., and Patty Murray, D-Wash., would ban balance bills from air ambulance companies. The bill passed committee and is now headed to the Senate floor for a vote, pending approval from Senate Majority Leader Mitch McConnell of Kentucky.

Air Methods said that, in general, it would support federal legislation that would calculate new rates for Medicare reimbursement, as long as they are based on cost data the industry provides.

But there is intense industry opposition to the bill. Combined with the complexity of the legislation (it also includes prescription drug price reform) and competing Senate leadership priorities, the measure faces a rocky path to the president’s desk, said Melissa Lorenzo Williams, manager of health care policy and advocacy at the National Patient Advocate Foundation.

“Despite having bipartisan and bicameral support, I can’t confidently say that this is something that will pass,” Williams said.

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. KHN is not affiliated with Kaiser Permanente.

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Dr. Jean-Jacques Muyembe says his story starts in 1973. He had just gotten his Ph.D. at the Rega Institute in Belgium. He could have stayed in Europe, but he decided to return to Congo, or what was then known as Zaire, which had only recently attained independence from Belgium.

If he had stayed in Belgium, he says, he would have been doing routine lab work. But in Congo, he would be responsible for the “health of my people.”

“But when I arrived here the conditions of work were not good,” he says. “I had no lab; I had no mice for the experimentation, so it was very difficult to work here.”

Being a microbiologist without mice or a lab was useless, so he took a job as a field epidemiologist. In 1976, he was called to an outbreak of a mysterious disease in central Congo.

Lots of people had died of something that presented like yellow fever, typhoid or malaria. Muyembe arrived to a nearly empty hospital. He says people thought the infection was coming from the hospital, and he found only a mother and her baby.

“I thought that it was malaria or something like this,” he says. “But in the night the baby died, so the hospital was completely empty.”

By morning, as the people of Yambuku heard Muyembe had been sent by the central government in Kinshasa, they started lining up at the hospital hoping he had medicine for them.

“I started to make physical exam,” he says. “But at that time we had no gloves in the whole hospital.”

And, of course, he had to draw blood, but when he removed the syringes, the puncture would gush blood.

“It was the first time for me to see this phenomenon,” he says. “And also my fingers were soiled with blood.”

Muyembe says he washed his hands, but it was really luck that kept him from contracting an infection. He knew immediately this was something he’d never seen before. Some of the Belgian nuns in the village had been vaccinated against yellow fever and typhoid, but this disease was different. It was killing people fast. When he took liver samples with a long needle, the same thing would happen — blood would continue to gush.

He persuaded one of the nuns who had the disease to fly with him to Kinshasa. He took blood samples before she died and sent them to Belgium, where they had an electron microscope to try to identify the culprit. Scientists there and in the United States saw this was a new virus that caused hemorrhagic fever.

They named it Ebola, after a river near the village.

The discovery, says Muyembe, was thanks to a “consortium of research.”

But Google “Who discovered Ebola?” and you get a bunch of names — all of them white Western males. Dr. Jean Jacques Muyembe has been written out of history.

“Yes, but it is …” he pauses. He takes a breath and laughs, looking for the right way to respond.

“Yes. It is not correct,” he says. “It is not correct.”

***

The man who gets the bulk of the credit for discovering Ebola is Dr. Peter Piot. At the time, he was a young microbiologist at the Institute for Tropical Medicine in Belgium. He was the one to receive the blood samples sent by Muyembe.

He describes his experience in No Time to Lose, a book about his professional life, including his vast work on HIV.

But Ebola was his big break. In the book, he describes how vials of blood had arrived in melting ice, some of them broken.

He describes how the World Health Organization ordered them to give up the samples, to send them to England and eventually the Centers for Disease Control and Prevention in the United States, which was one of the only labs equipped to handle a deadly virus like Ebola.

He describes how angry that made him and Dr. Stefaan Pattyn, the man running the lab at the time, who died in 2008.

“[Pattyn] claimed that we needed a few more days to ready it for transport,” Piot wrote. “So we kept a few tubes of VERO cells, as well as some of the newborn mice, which were dying. Perhaps it was a stubborn rebellion against the whole Belgian history of constantly being forced to grovel to a greater power. That material was just too valuable, too glorious to let it go.”

Almost simultaneously, scientists at the CDC and Piot looked at the samples under an electron microscope and saw a snakelike filament — huge in comparison to other viruses and very similar to the Marburg virus. The CDC, which kept the world’s reference lab for hemorrhagic viruses, confirmed this was something new. This was Ebola.

***

The Congo National Institute for Biomedical Research sits in the middle of Kinshasa.

There are ragged couches along the corridors and goats feeding in the courtyard. But this is where the bulk of the science is being done on the second largest Ebola outbreak in history.

Tucked in corners around the building, there are high-tech labs. Scientists in full biohazard suits run Ebola samples through sophisticated machines that spit out DNA sequences. On the bulletin boards outside the offices, scientists have pinned papers published in international journals about the science done right here.

Workers are constantly dragging in boxes of brand-new scientific gear. On this day, almost all of them are stamped with the American flag.

It’s no secret there is resentment among scientists here about what many believe is a marginalization of their work by the West.

Joel Lamika, who runs an Ebola smartphone app at the institute, says many foreign governments want to stamp their flags on the work Congolese have done.

“They want to claim like it’s theirs,” he says. “But it is theft.”

Lamika says perhaps one good thing that has come out of this latest Ebola outbreak is that it is giving the world a chance to rewrite history.

Muyembe, he says, is a national hero. His picture is on a huge banner in front of this institute. During previous Ebola outbreaks, and especially the huge one in West Africa that killed more than 11,000 people, the the scientific community used Muyembe as an example of someone who had gotten it right. Under his leadership, Congo had managed to quickly quell nine previous outbreaks.

Maybe this outbreak, he says, will give the world an opportunity to know who Muyembe is.

“It’s time for the world to learn that Ebola was discovered by a Congolese,” he said. “By Dr. Jean-Jacques Muyembe.”

***

Today, Peter Piot is the director of the prestigious London School of Hygiene and Tropical Medicine. He’s friends with Muyembe and expresses nothing but admiration for not only his scientific prowess, but the way he has managed public health emergencies.

But in his book, he mentions Muyembe only in passing, as a bright scientist constantly pressuring Piot for more resources.

When asked if he feels responsible for writing Muyembe out of history, Piot pauses.

“I think that’s a fair comment,” he says. “But my book was not an attempt to write the history of Ebola, but more my personal experience.”

Piot says at the time of that first Ebola outbreak, African scientists were simply excluded. White scientists — with a colonial mentality — parachuted in, took samples, wrote papers that were published in the West and took all of the credit.

But things are changing, he says. Muyembe, for example, is finally starting to get his due. He was recently given a patent for pioneering the first treatment for Ebola and he has received several international awards, including the Royal Society Africa Prize and, just this year, the Hideyo Noguchi Africa Prize.

“That reflects, I think, the [change in] power relations in global health and science in general,” he said.

During this outbreak, Muyembe has also made a decision many thought unthinkable even a few years ago. He decided that all of the blood samples collected during this Ebola epidemic will stay in Congo. Anyone who wants to study this outbreak will have to come to his institute.

American scientists, who have led the way in studying Ebola, have privately expressed frustrations. But Piot says the decision was obviously made because of how African scientists have been treated. Western scientists, he says, should get over it.

“We have to wake up to two things,” he says. “One, the world has changed. And two, it’s a matter of fairness.”

***

Muyembe keeps his office ice cold, and when he talks, he nervously drums a pen against his notebook. He’s terribly serious about his work, but he also offers an easy smile as he remembers his work.

The thing that makes him glow is talking about the treatment he developed.

“It is the most important achievement of my life,” he says.

In 1995, during another outbreak, he wondered whether antibodies developed by Ebola survivors could be siphoned from their blood and used to treat new cases. So he injected Ebola patients with the blood of survivors, taking inspiration from a practice used before sophisticated advances in vaccine-making.

“We did eight patients and seven survived,” he says.

The medical establishment wrote him off. He didn’t have a control group, they told him. But Muyembe knew that in this village, Ebola was killing 81% of people. Just this year, however, that science became the foundation of what is now proven to be the first effective treatment against Ebola, saving about 70% of patients.

“But if this idea was accepted by scientists, we [could have] saved a lot of people, a lot of lives,” he says.

You can tell Muyembe is hurt by all this. Ever since he returned to Congo, he has fought for recognition for his country. His whole life, he has dreamed that big science could come out of his home country.

Just as he announced that samples would not leave Congo, he also got a commitment from Japan to build a state-of-the-art research facility right here. Soon, the goats in the courtyard will be gone, replaced by a facility just as good as those in Belgium or in the United States.

At 77, Muyembe says he doesn’t regret coming back to Congo. And, unlike when he returned in 1973, now he has equipment.

“Now I have mice here,” he says, laughing. “I have mice. I have subculture. Now, everything is here.”

His biggest legacy, he says, won’t be that he helped to discover Ebola or a cure for it. It’ll be that if another young Congolese scientist finds himself with an interesting blood sample, he’ll be able to investigate it right here in Congo.

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