“It’s not free”
In addition to charities like Hope’s, St. Jude families have repeatedly turned to fundraising sites and networks of their relatives, friends, and neighbors to help cover basic expenses while unable to work during their children’s treatment. Parents’ requests on fundraising sites are sometimes desperate pleas.
In January 2017, one father in North Carolina said he’d had to abandon a business venture to take time for his son to receive care at St. Jude. His income had plummeted. He asked friends to give as little as $10 to “at least make it possible to survive.”
This year, a mother in Memphis whose 1-year-old son receives care at St. Jude for sickle cell disorder ran out of medical leave and couldn’t work her shifts at a clothing distribution center. After the child had a flare-up in July requiring several days of treatment at the hospital, she said she returned home to find her power shut off. Sitting in a dark apartment, unable to pay her utility bills, she set up a GoFundMe campaign. She received less than $20 through the site; her relatives eventually pooled $350 to get her electricity restored.
Even parents with stable jobs and private health insurance often take on debt and need outside help.
When Taylr and Treg Murphy’s 17-year-old son Peyton was diagnosed with cancer and needed monthslong treatment at St. Jude in 2017, the entire family – mom, dad, sister, and brother – went with him, traveling from their home in Lafayette, La., to Memphis. Treg took a leave from his job at an oil mining company and Taylr, who works at her mother’s bakery, did the same.
“We knew that it was going to be a collective team effort,” Treg said. “Without even a discussion, we figured that if Peyton’s got to go for the surgery, we’re all going.”
Peyton had an enormous tumor that had grown out of his right femur and was crowding his knee. Rounds of chemotherapy appeared to have killed osteosarcoma cells elsewhere in his body. But he needed to undergo a procedure called limb-sparing surgery that would require weeks of recovery time at the hospital.
The hospital agreed to allow all five family members to stay for free at St. Jude if they bunked together in a single room. It assigned them a spot in Tri Delta Place, its hotel-like short-term patient residence on the campus. Tri Delta is set up for visits of up to seven days, according to the hospital’s guide for volunteers, but the Murphys were there for almost 50.
Taylr said the unit at Tri Delta had no oven or stove and St. Jude provided no grocery money, instead allotting them a $50-per-day credit at the hospital cafeteria, Kay Kafe – not enough to feed the family of five. As the weeks wore on, the Murphys split grilled cheese sandwiches and paid for food out of pocket.
After ProPublica asked about the hospital’s food allowances, St. Jude said it would increase them as part of the changes scheduled to go into effect this month. The hospital switched from a $50-a-day cap per family to providing $25 a day to each family member. For a family of four, that would double the food benefit. A weekly stipend given to families in long-term housing was increased to $150 from $125.
For the Murphys, it was the loss of their work income, more than out-of-pocket expenses, that put them into a financial hole as Peyton’s treatment went on. Treg’s employer couldn’t pay him during his long absences.
Fearful of being evicted or having their car repossessed, Taylr said she asked a St. Jude social worker for assistance. The social worker helped her apply for grants from other charities. Taylr said the B+ Foundation paid their rent one month, which ensured they’d have a home to return to.
In the years since his initial treatment, Peyton has gone back to St. Jude repeatedly for exams and surgeries to remove malignant growths in his lungs. Taylr and Treg have missed more work to bring Peyton to Memphis, costing them thousands of dollars more in income.
By the start of this year, Taylr and Treg said they were about $20,000 in debt and panicking. Dustin Poirier, a former UFC champion from their hometown, heard from a friend about Peyton and the family’s financial trouble. He donated $10,000 to them from his personal charity and in May hosted a local fundraiser that collected enough to pay off their credit cards.
St. Jude families sometimes commiserate about money problems with each other, Taylr said, but few are aware of the extent of the hospital’s unspent resources. The Murphys said they didn’t know St. Jude has more than $5 billion in reserve or that it continues to raise hundreds of millions of dollars in surplus donations each year.
“That’s just insane,” Taylr said. “That just blows my mind. When we first started getting treated, people would be like, ‘Oh, St. Jude covers everything, that’s awesome.’ That’s not how it works. People don’t understand that. I truly didn’t understand before I got into St. Jude.”
Taylr and Treg said the doctors at St. Jude are “amazing” and they’re grateful for their son’s care. But they bristled at the assumption that it was covered by the hospital’s charity. The family’s insurance paid a substantial part of the bills.
“It’s not free,” Taylr said. “My husband works very hard for the insurance we have – and they are billed.” The Murphys pay $12,000 in health insurance premiums each year.
Their struggle continues. Peyton’s cancer has relapsed, and he’s making regular trips with his mom or dad back to St. Jude for chemotherapy. The family is again applying for help from other charities.