Sam Hart should have breezed through the 100 single-digit math problems. The then-14-year-old was an honor roll student. But, in the previous few months, his parents noticed his behavior had changed.
He was having outbursts. He stopped eating, dropping 31 pounds to 107. His handwriting went from almost obsessively neat to barely legible.
The 100-problem test took him 30 minutes. By the time he was done, only 20 answers were correct.
“[He] was just a completely different kid,” said his mother, Jennifer Hart.
The test and his handwriting were two of the symptoms that Jennifer found on a website for pediatric autoimmune neuropsychiatric disorders associated with Streptococcal infections (PANDAS), an autoimmune disease caused by strep bacteria. Symptoms include severe obsessive-compulsive disorder or a tic syndrome, which can suddenly appear or worsen overnight, according to the National Institute of Mental Health.
There were 21 symptoms listed on the website Jennifer found. Sam appeared to have 19 of them.
As a toddler, Sam had been diagnosed with an autism spectrum-like disorder, but he had been attending Brunswick Middle School with the help of an aide. Eventually, he could no longer handle being in school. Sam was regressing.
Jennifer was right. A blood test confirmed the PANDAS diagnosis, and Sam’s doctor recommended a procedure known as Intravenous immunoglobulin (IVIG), one of several treatments used for PANDAS. It was an expensive procedure, but the Harts’ insurance company told Brent Hart, Sam’s father, it would be covered and provided an advocate to walk the family through the process.
Yet instead of receiving a full reimbursement check for the procedure after it was completed, the family was told there had been a mistake.
Medical needs, such as necessary procedures or hospital visits following unexpected illnesses, drive families like the Harts into debt. These lifesaving or life-giving procedures are expensive but nearly unavoidable for people wanting to improve their quality of life — a decision between high costs of care and the high costs of avoiding care. But the debt that follows continues to define the lives of families months and years after a procedure.
And in the case of the Harts, they were looking at a $14,000 bill — at 24 percent interest.
In 2001, the Hart family had just celebrated their son’s first year of life when Sam was diagnosed with pneumonia. Then a leaky gut. The happy baby changed. He stopped progressing and hitting developmental milestones. By the end of a two-year journey of doctor visits and tests, Sam was diagnosed with pervasive developmental disorder not otherwise specified, which mirrors the behaviors of someone with autism spectrum disorder.
Despite the diagnosis, Jennifer said Sam went to school, where he did well with the help of an aide.
But he knew he was different. One day, Sam came home from school and asked Jennifer to fix him. He pointed to himself, saying he was broken. It was painful for his parents to see.
“That hurt,” said, his father, Brent.
Sam began to change when he became a teenager. His hormones surged as he went through puberty, bringing on new behaviors. He began acting out, Jennifer said, acting much younger than his age. Sam became obsessive. He would scream when his mother shifted furniture, and then he would try to move it back himself.
“What 14-year-old cares about the furniture?” Jennifer said.
His parents were baffled by the sudden change in behaviors. There were more doctor visits and tests. Finally, in September 2015, when Sam was 15, his doctor, Dr. Richard Layton diagnosed Sam with PANDAS because of an abnormally high number of strep antibodies in his system.
Sam was referred to Dr. Elizabeth Latimer at Georgetown University, who he saw in December 2016.
Latimer first treated Sam with antibiotics, which helped, his parents said, but they did not help enough. Those were covered by the insurance, the Harts said. The antibiotics can also have negative long-term side effects, Jennifer said. Sam took three medications, three times a day, all at high dosages.
Latimer told the Harts that Sam was a good candidate for the IVIG, based on blood tests and his response to antibiotics and other medication.
She was out-of-network for the family, but Brent called their insurance company. Brent said a representative said it would make an exception for them because Latimer was the only one in the region that could do the procedure.
Latimer did not respond to multiple requests for comment.
Sam received the IVIG in late February 2017. The Harts charged the $15,773.40 procedure to two credit cards. They expected to be reimbursed by the insurance company before the 12-month interest-free special offer expired.
The response to the procedure was almost immediate, Jennifer said. Sam’s face had a sunken appearance with dark circles under his eyes. As he was hooked up to the IV, which pumped a blood product, made from the several thousand blood donations, into his body, the skin around his eyes puffed up. The black bags disappeared.
“That was miraculous for [Brent] and me to see,” Jennifer said.
In March, the Government Employees Health Association sent the Harts a letter saying they would not cover the IVIG in full because it was medically unnecessary. The Harts spoke with the insurance company about the decision multiple times, even filing a complaint with the attorney general’s office. The Harts said a GEHA representative acknowledged reviewing the conversation about covering the IVIG, but what the Harts had been told was wrong and the company would not change its decision. They would receive the plan’s standard out-of-network insurance reimbursement.
The first reimbursement check from the company arrived nine months later. At $3,626.75, it was significantly less than the Harts expected. The next one came a month later. Only $4,986.15, covering in total about half of the IVIG’s cost. The Harts’ insurance plan describes covering 65 percent of out-of-network costs.
Sam Goller, director of marketing at GEHA, did not return calls for comment on the insurance company’s decision.
Dr. Yuval Shafrir, of Sinai Hospital in Baltimore, will prescribe the IVIG procedure, depending on the patient. One factor he considers, in addition to severity of the condition, is insurance.
“The problem with IVIG is we can prescribe it but the patient cannot get it because of the pure evil insurance company,” Shafrir said. “We allow families to be destroyed. The amount of suffering associated with this condition is unbelievable.”
There are guidelines and research published on PANDAS and IVIG, but the insurance companies often say it is experimental and not covered. This leaves parents who have always had insurance unable to treat their child. Some, like Diana Pohlman, founder of PANDAS Network, will still pay for the procedure, but it is expensive.
Both of Pohlman’s children were diagnosed with PANDAS and treated with IVIG. The procedures for her children were not covered by her insurance. Pohlman said typically an IVIG procedure costs $1,000 for every 10 pounds a child weighs.
“So, yeah, it can rack up,” Pohlman said.
Shafrir is frustrated. He sees patients who cannot get treatment that could help them because of it’s not covered by insurance. He calls it “Sodom and Gomorrah,” referencing the two wicked biblical cities.
He wants parents to realize this could happen to their own child, and there needs to be more regulation on insurance companies.
“The amount of evil I am exposed to in treating those patients in the last three or four years is just unbearable,” he said. “And the people on the streets have no idea this is going on.”
A necessary sacrifice
For the Harts, not only did they pay for the infusions, but they paid for the multiple doctor visits leading up to it. A visit with Latimer cost approximately $475, totaling about $1,821 for all the appointments, Jennifer said.
“Not a lot you can do,” Jennifer said. “When you have a sick child, you’re going to go where you can go.”
Between the multiple appointments, the procedures and other medical costs, the Harts faced approximately $13,854 of debt after reimbursements. With the special credit card offer ending, the Harts had just over a month to pay off their debt before the 24 percent interest rate kicked in.
There are only two known studies examining if IVIG works for people with PANDAS, both of which supported use of the procedure. It improved the quality of life for Sam. He is calmer now, the Harts said. He is more engaging. Where he used to respond only in three-word sentences, he is now using more terms and questions. Previously, he would walk around with his fingers in his ears. That behavior did not continue after the IVIG.
Sam graduated from high school in May 2018 from an online program. That was in part because he got the IVIG procedure. Not everything has returned, but Jennifer said they are still hoping that Sam will regain some of the behaviors and personality traits he had before. Looking back, the Harts said due to Sam’s regression, it is as though he lost two to three years worth of development.
“It worked. Isn’t that what you have insurance for — because you need a treatment that’s going to help you to be better? And my whole thing was this is a kid. You’re not talking about someone who is 80 years old or something. He’s just starting his life,” Jennifer said. “Doesn’t he deserve to have a medical treatment that’s going to make him better so that he can go and have a life?”
It was never a question of whether Sam would get the IVIG, the Harts said. It was a matter of how they would afford it. Looking back, Jennifer and Brent said they would have asked their parents for help. A loan was not possible. In 2016 — the year before Sam’s IVIG — the Harts had taken out of a loan to make repairs on their home and used their house as collateral.
If they would have known what they know now, they never would have charged the procedure to their credit cards.
The debt effect
More than a fifth of Americans face situations similar to the Hart family’s.
A large out-of-pocket medical bill is one of the most common forms of financial hardship Americans face, according to a 2018 report from the Federal Reserve System. More than a third of those Americans have unpaid medical bill debt.
A 2016 survey by the Kaiser Family Foundation and The New York Times found that 62 percent of people with trouble paying medical bills have insurance.
Frederick attorney Kevin Shipe said about a third of the clients at his office filing for bankruptcy have medical debt. The debt can be scary, Shipe said. Debt collectors can harass people or make them feel like they could be arrested for failing to pay.
Matthew Notowidigdo, Northwestern University associate professor of economics, was part of the research team that redefined the role of medical debt in financial hardship. The research citing the 62 percent figure was based on several surveys in which respondents who were bankrupt were asked if they faced high medical bills or went bankrupt because of medical bills.
Determining how important a medical bill was to a bankruptcy is hard to measure, Notowidigdo said. Survey respondents may be more likely to blame medical bills than measure the role of other spending habits. It is also difficult for people to speculate what would have happened in their life without the medical bills.
However, other medical debt effects are more apparent, Notowidigdo said.
“Bankruptcy is a very rare event,” he said. “Focusing on that is really maybe distracting from the fact that there are a lot of other consequences from health shocks and hospital admissions.”
Notowidigdo has analyzed the economic consequences of a hospitalization, many of which occur regardless of someone’s insurance status. For example, a 2018 report in the American Economic Review found that for Americans less than 65 years old, a hospitalization resulted in reduced earnings, access to credit and consumer borrowing on top of the increased medical expenses and risk of bankruptcy.
The study found that a hospitalization can reduce earnings by 19 percent because of a decrease in productivity or life expectancy. Patients more than 50 years old face a 15 percent decrease in the probability of being employed after a hospitalization, the study found.
While people may charge high bills to their credit cards, Notowidigdo and the researchers found that people are less likely to use credit cards after a hospitalization. This is one of several indications that people with medical bills become less likely to spend at all, Notowidigdo said.
“This decline in credit card borrowing is just going along with the fact that these households are just pulling back and cutting back,” he said. “They’re just consuming less and borrowing less and spending less. And that really was the main outcome of their hospital admission.”
The pulling back of spending is more than just tightening of a budget. The Kaiser Family Foundation and The New York Times survey found that 70 percent of those with medical bills cut back on buying food, clothes or basic household items. More than 40 percent took on another job or extended their work hours, which meant less time with family. Around a quarter of the people took money out of retirement or college savings.
The Hart family did all this and more.
The cost of medicine
Last March, the oil ran low. The Harts’ home in Brunswick is heated by oil, and an oil tank can never be empty without damaging the system. The problem? They couldn’t afford to refill the tank.
They also have a wood-burning stove to help heat the house. But by March, stores typically stop selling wood pellets.
“March was a cold one,” Jennifer said.
A cold house is just one of the adjustments that the Harts have made to be able to pay off their debt. Going without became like second nature, Jennifer said. The family does not go to restaurants. Jennifer has always liked to cook, but now she does it on a budget. She aims to keep the four-person family’s weekly grocery budget to just $100.
“We like Ramen noodles,” Jennifer said. “We started eating like we were in college again.”
Jennifer and Brent do not go out on dates. The family does not go to the movies. They cut each other’s hair. Brent sold old tools on Craigslist. The college fund they planned to start for their daughter, Annalise, never happened.
Annalise, 16, is a fan of Marvel movies, or as Brent would say, Chris Hemsworth. She wanted to see the latest “Avengers” movie in theaters. The family could not justify spending $26 on the trip.
The Harts were able to give Annalise a 16th birthday party — an escape room followed by pizza — but that required Jennifer to work four extra library shifts. That also meant Annalise had to babysit Sam four extra times. Hiring a caregiver for Sam is too expensive when Jennifer and Brent are working.
“She’s the little sister, but she’s forced to be the big sister,” Brent said.
And then there are emotional challenges that have come with the tight budgets. Brent’s father was sick. His parents had visited from Texas for Thanksgiving in 2017, but his father had a turn for the worse weeks later around Christmas. Brent could not afford to fly home to see his father before he died.
Around the same time, Jennifer’s mom went into hospice. Jennifer wanted to fly to Minnesota to see her, but tickets weren’t something they could add to their budget.
The Harts set up a GoFundMe campaign and have raised nearly $8,000 to help with the mounting debt. It was the only way they were able to put tires on their truck. The money raised from the generosity of others has been a bandaid fix for them.
“It’s emotionally hard,” Jennifer said. “You need the help, but you’re thinking, ‘OK, we’re employed. We have decent jobs or we’ll have decent jobs again. We’re working. We have insurance. … We want to help people.’”
The Harts look like the middle-class family that would be donating to a GoFundMe site — not setting up its own. Brent works for the FAA. Jennifer works part time at the library.
“It’s very humbling,” Jennifer said. “It’s very hard at the same time.”
The insurance problem
Setting up the GoFundMe campaign meant sacrificing pride and privacy. It meant selling their son’s illness, something that does not sit well with Brent or Jessica.
“It’s frustrating,” Brent said.
The two are left with unanswered questions. They still do not understand how the insurance company could admit to a mistake but face no consequences. While they understand that the company acted within the policy, it left them with an insurmountable amount of debt.
“How is this business still thriving? How can we be OK with this?” Jennifer asked.
The president of GEHA made $482,966 in 2016, according to the company’s 990 tax form. The majority of the vice presidents in the company make more than $200,000 a year
Insurance is supposed to support people, especially in times of need — not leave them in debt, Jennifer said.
“We’re supposed to not be a country where only wealthy people can afford to have their kids taken care of,” she said. “That’s not what America is supposed to be.”
But for millions of Americans, it is.