By the time nine-year-old Keyonte was diagnosed with cancer, Hurricane Harvey had already displaced his family and damaged their finances.
Mold had damaged their Houston-area house after the 2017 storm, and they’d moved first to a motel for several months, then into another place.
Originally, Keyonte had been an outgoing child who liked video games and superheroes, but he began to withdraw, said Reyna Harris, Keyonte’s mother: “He used to be outgoing, but now since this has happened… I guess you could say he kind of shut down a little.”
Then he began complaining that his stomach hurt. A trip to the emergency room resulted in a kidney cancer diagnosis. He underwent chemotherapy and surgery, but the cancer came back, this time on his lung.
Cancer wasn’t just devastating – it was tremendously costly. Keyonte’s father had been working full-time before the diagnosis, but his son had so many medical appointments that he had to quit his job to provide the necessary transportation.
Keyonte’s Medicaid insurance didn’t cover all of his prescriptions. The family couldn’t keep up their car insurance, and the cost of transportation was becoming unmanageable.
Even with SNAP benefits and subsidized housing, the family couldn’t keep afloat.
And all the while, they were fighting an ongoing battle with Keyonte’s cancer. “So far they said that he’s OK, but they won’t know if they see anything else until they do a full-body scan,” scheduled for this month, Harris said.
Breaking Through and Leaving a Gap
The financial strains that Keyonte’s family experienced are common, said Carla Tardif, CEO of Family Reach, an organization that provides cancer patients and their families with financial assistance and planning.
“We’ve seen a side of cancer that people don’t talk about, and we’ve seen a side of cancer that isn’t being addressed,” she said.
Cancer patients frequently face enormous financial burdens. They are 2.65 times more likely to file for bankruptcy than people without cancer, and more than 40% have exhausted their life savings within two years.
And that, in turn, can have devastating consequences for mortality. Cancer patients who file for bankruptcy are 1.79 times more likely – in other words, nearly twice as likely – to die as those who don’t.
Much of that financial burden comes from medical costs, said Dr. Yousuf Zafar, a professor of medicine at Duke University who studies the relationship between cancer and finance.
“Cancer treatment has gotten more and more expensive over the past few years,” he said. As cancer treatment grows more sophisticated and tailored, drug prices increase as well. “Along with those price increases, insurers have started shifting the cost to patients – copays, insurance.”
Dr. Zafar first became interested in the subject around the time of the 2008 recession. “I realized my patients were asking me for less expensive treatment and fewer visits. These were all patients with insurance,” he recalled. Doctors simply weren’t aware of the rising costs of treatment, he explained.
When it comes to cancer care, Tardif said, “I’m in awe of the brilliant minds and what they’re able to do. But then I reflect on what I see every day, and it’s clear that the gap between the science and the patient is only getting wider.”
The Hidden Costs
But it’s not just about the medical expenses. Family Reach actually focuses on a frequent, little-known aspect of cancer management: non-medical barriers like a family’s housing costs, utility bills, car insurance, and gas.
When cancer strikes, Tardif said, a family’s income takes an immediate hit. An adult with cancer may not be able to work. If a child is diagnosed with cancer, one parent will generally stop working to care for that child – limiting the family’s income just as expenses are beginning to pile up.
And “if you’re a single parent and your child is diagnosed with cancer, your income is cut by 100%,” she said.
Add copays, out-of-home-meals, and an increase in transportation costs to the mix, and you’ll make an untenable situation for many.
Tardif has her fair share of horror stories. She’s worked to get the heat turned on for an immunocompromised patient during a Boston winter. The parents of a child with brain cancer couldn’t go home because a repossession agent was waiting in their driveway.
But add a natural disaster like Hurricane Harvey – itself a highly traumatic event with long-ranging financial consequences for many people – to the mix, and you’ll compound the issues.
A mold-damaged home can be dangerous to a cancer patient with a fragile immune system. No home at all may be worse. “The hospital is where you’re treated, but the home is where you heal,” Tardif said. “So losing your home has a direct impact on your ability to heal.”
In addition, “cancer care requires a great deal of care coordination and follow-up and supportive care,” Dr. Zafar said. “For patients who have a disrupted network or access to transportation or care,” there can be real and long-lasting consequences.
With funding from Direct Relief, Family Reach began working with the families of cancer patients affected by Hurricane Harvey in October of 2019.
Anya Spratley, a social worker at Family Reach, said that while their cases are similar in many ways to what many cancer patients experience, the hurricane makes them unusual in some ways.
“One of the major differences we see is that a lot of the families…had a lot of financial distress even prior to the cancer diagnosis,” she said. “They may have already wiped out their savings. They may also have credit card or personal debt.”
Spratley has seen a young man – already a parent – whose cancer required so much care that he moved back in with his own parents. When flooding damaged their home, they didn’t have the money to fix it.
Another family, whose child already had cancer, had been in Houston for treatment when the flooding hit, only to find themselves stranded and fighting for lodging.
Family Reach works with hospital social workers and the families themselves to develop a complete understanding of each unique financial picture. They connect people to financial planners who work with them to develop a more stable situation. If a family’s needs are greater than they can accommodate, they’ll help them find the resources they need.
“We know once our work with them ends, they’ll be set up for a better financial situation moving forward,” Spratley said.
Tardif is hopeful, but frustrated by the lack of awareness around cancer and finances.
“All of these great trials and breakthroughs, it doesn’t matter to [the patients]. They don’t know how they’re going to get through today. They don’t know how they’re going to get to treatment tomorrow,” she said. “I’m not smart enough to cure cancer, but we can fix this.”