Congress is working on legislation to shield American patients from steep medical bills. But that’s only one piece of the puzzle for cancer patients and their families, who face financial burdens far beyond just the costs of care.
Cancer patients may have to quit their job while undergoing treatment. They may have to travel out of state to see specialists. They may have to follow a special, more expensive diet. The burdens can be augmented for parents of children with cancer, placing huge stress on the entire family.
That’s why Grammy-winning band Imagine Dragons, originally from Las Vegas, has created a foundation specifically to provide nonmedical assistance to families dealing with a pediatric cancer diagnosis. The purpose of the Tyler Robinson Foundation — which members of the band described during a Post Live interview — is to provide such families with extra dollars to support their well-being in a variety of ways while grappling with cancer.
These families might use the funds to buy Christmas presents they couldn’t otherwise afford. Or they might put them toward a special vacation or defray extra costs for transportation or lodging.
“Pediatric cancer is not a diagnosis for one child. It hits the entire family,” Daniel Platzman, the band’s drummer, said at the Post’s “Chasing Cancer” event.
“A lot of times one of the parents will have to quit their job in order to be a full-time caregiver,” added bassist Ben McKee.
“A lot of times, these families have four or five kids and one of their kids has a diagnosis,” he said. “All of a sudden, every extra dollar they have is sucked up in trying to pay for these medical procedures, so life is harder for this family all around.”
Medical-related debt remains the leading cause of bankruptcy in the United States. Medical expenses are a contributing factor in two-thirds of individual bankruptcy filings. In a 2016 Kaiser Family Foundation poll, more than a quarter of U.S. adults ages 18 to 64 said they or someone in their household had problems paying medical bills in the past year.
When it comes to cancer, which often requires months of chemotherapy or radiation, the indirect costs are even greater than the direct costs of the care. Indirect costs such as lost income account for 70% to 85% of the total costs for these patients, studies have found.
In a 2008 study of 28 families with a child diagnosed with cancer, nearly nine in 10 of the mothers cut back on their work hours or quit altogether because of the diagnosis. The families also reported severe financial losses resulting from traveling for treatment and follow-up care, out-of-pocket expenses for treatment and an inability to get help from financial assistance programs.
Imagine Dragons took up the cause of pediatric cancer after the bandmates befriended a young fan, Tyler Robinson, who was fighting a rare form of cancer that affects muscles and other connective tissues in the body. After hearing Tyler’s story from his brother, the band played their hit “It’s Time” for Tyler at a concert, in a performance they described as the most powerful moment of their career.
“When we played that show that night, his brother held him up on his shoulders,” said the band’s lead singer, Dan Reynolds. “The most impactful moment of our 10-year career. I can’t really explain to you the magic that was in that room.”
After Tyler died in 2013, the band decided to start a foundation in his honor. Reynolds said the idea was born the night after Tyler’s death.
“I called his brother, and we talked on the phone and said what can we do to help Tyler’s impact and legacy live on,” Dan said.
The Tyler Robinson Foundation has since raised nearly $10 million for grants to families to help them with housing, energy and utility expenses, treatment travel costs, and funeral and burial expenses. The band members said the foundation especially tries to help families just above the poverty line, who may not be eligible for public assistance programs.
Lead guitarist Wayne Sermon said it was a “no-brainer” to get behind the cause of helping kids with cancer.
“Not only did you get the worst news of your entire life, also, you might go bankrupt,” he said. “To battle those two fronts at the same time — it takes only a slight bit of empathy for that to be a cause you can get behind.”