St. Jude hoards billions while many of its families drain their savings

“Borrowing and begging”

Catherine Rainey thought she would be free of financial worry when her 2-year-old daughter Harlee was admitted to St. Jude last year.

“The first thing my dad said was: ‘Catherine, you have nothing to worry about. They raise billions of dollars. Anytime you have a problem, you tell them and they will take care of it,’ ” she said.

But like many families, the Raineys discovered that St. Jude’s charity came with limits on payments for expenses such as travel that could be bewildering.

Harlee ended up at St. Jude after first going to nearby Niswonger Children’s Hospital in Johnson City, Tenn., in October 2020. The doctors there discovered a cancerous mass attached to her right kidney. The hospital is a St. Jude affiliate, and the doctors recommended the toddler be treated in Memphis.

Rainey, a single mother of two young girls, had to leave her job as a nurse for months to be with Harlee at St. Jude. The loss of income quickly created problems. “My family, we don’t come from money,” she said. “We are not doctors and billionaires. We make it. That is it.”

St. Jude did provide food and housing on campus. But the hospital said it couldn’t help with the items that were causing Rainey to worry, including car payments, insurance, and cellphone bills.

Rainey’s boss set up a GoFundMe account to help make up some of her lost income. A small local charity, Kari’s Heart Foundation, also helped out by paying about $3,000 worth of phone bills and car payments, staving off repossession.

“It was just a bunch of borrowing and begging,” Rainey said of her experience while her daughter was treated in Memphis. “They acted like it was coming out of their own pocket.”

Harlee has checkups at St. Jude every three months that last about four days. The costs of travel to and from St. Jude put an additional strain on Rainey and Harlee. St. Jude is an eight-hour ride, without stops, from Rainey’s home in Appalachia, Va., a town of 1,432 people near the Kentucky border.

Rainey said her daughter generally can make it about two-thirds of the way, with frequent stops, before she has had enough. “When she is done, she is really done,” Rainey said. “She will scream, cry, and kick.”

In July, in advance of an August trip to Memphis, Rainey called the patient services department at St. Jude to see whether they could help pay for a hotel to break up the travel day — an expense Rainey said she could not afford.

To qualify for a hotel reimbursement, Rainey said, St. Jude told her she had to live more than 500 miles from Memphis. The ride from her home to the hospital is 530 miles (a measurement ProPublica confirmed with mapping tools). However, Rainey said, St. Jude told her it measured the trip from city limit to city limit and came up with a distance of 491 miles. Even using that metric, the distance is still more than 500 miles, ProPublica found.

When she challenged the hospital’s stance, Rainey said she was berated by a patient services representative.

“I was feeling pissed off, and I was crying,” Rainey said of the interaction. “You give up your whole life for your child, and they tell you don’t worry about anything, we will cover this and then they tell you to just push through the drive.”

Rainey did what she could to make the trip go smoothly: She configured a small table to extend across her daughter’s car seat, so Harlee could play with the coloring books, markers, and Play-Doh bought for the ride. She packed snacks and a cooler full of drinks. Since Harlee was still potty training, she brought extra towels and clothes for accidents. The final step was handing Harlee her Baby Yoda doll once she settled into her car seat. Rainey had sewed a port in the doll’s chest to mirror the one Harlee has in hers.

About three hours from Memphis, Harlee was crying inconsolably. Rainey pulled off the interstate and stopped at the first hotel she could find. She later learned it had been described in online reviews as “awful,” a “nightmare,” “disgusting,” and “horrible.”

“I didn’t know the area,” she said. “The hotel was garbage. It just made it worse.”

The drive home also required a hotel stop, but this time Rainey was able to find one that was cleaner. A $100 donation from a local charity helped to offset the cost.

Among the changes St. Jude is making is to reimburse families like Rainey’s, who live more than 400 miles from the hospital, for an overnight stay at a hotel when making the trip to Memphis.

Rainey said she was called by a St. Jude representative after ProPublica asked about her situation and was told the hospital would pay for her past hotel stays when traveling back and forth to St. Jude. The representative, Rainey said, also told her the hospital discovered the way it had been measuring mileage was inaccurate.

“I am not the only one,” Rainey said. “There are others. They should reimburse all the families.”

The anxiety of unpaid bills piling up, combined with caring for a child undergoing chemotherapy or radiation, takes a severe toll on parents and guardians, said Christopher Hope, a UPS driver who started a Memphis-based foundation after meeting St. Jude parents who were in financial crisis.

Hope’s small charity spent $12,000 last year to help families. Parents in St. Jude social media groups often refer families in need to it. The charity has helped families cover mortgage and car payments.

“I never knew anything about this until hearing about it from families,” Hope said. “All we hear is about kids and treatment, not the other side of it.”