Katie M. sat anxiously in the Cleveland-area hospital alongside her husband, Pete, who had been recently diagnosed with a brain tumor. A million thoughts ran through her head as Pete was in the ICU awaiting surgery in June 2018. A shrill ring interrupted her thoughts — her husband’s boss, from the architecture firm he worked at, was calling.
“Hey, just so you know, we’re going to pay for Pete’s next paycheck, but we won’t be able to keep him on our payroll until he returns to work.”
That call marked the moment when Katie realized the serious financial challenges ahead. Only the day prior, doctors had shared with her what Pete’s recovery would look like following surgery. Katie had been pondering how much time she would need off of work to support his recovery when she learned the news that her family only had one final paycheck from Pete’s job.
Pete’s Job Loss Impacts Finances
As two working parents in their mid-30s with young kids ages 2 and 5, a brain cancer diagnosis was the furthest concern from their minds. Life abruptly changed for their family when Pete’s co-workers noticed a difference in his language, his speech wasn’t making sense, and he appeared pale. En route to the hospital in an ambulance, Pete suffered several grand mal seizures. The health care team ruled out a stroke and quickly pinpointed a brain tumor to be the cause.
Testing following his craniotomy determined the tumor was glioblastoma, so he began the standard of care treatment with chemo and radiation. Unable to return to work due to a combination of aphasia, memory loss, and fatigue, Pete’s family suddenly became a single-income household.
“My husband was at the hospital for nearly a month just trying to get seizures under control in those early days,” Katie said. “It was a very expensive bill, and we had ambulance bills plus child care and other things. I had to take an extended leave from work. I was able to get some vacation time and keep it paid, but there was a gap when neither of us had any income coming in.”
About ⅔ of cancer patients are unable to work full time following a cancer diagnosis. The loss of Pete’s income meant Katie needed to figure out how they could still pay their bills. She considered selling their home because she wasn’t sure how to cover their mortgage payments. After all, they had purchased a larger home only six months before Pete’s diagnosis and had based their decision to buy the house on their combined salaries.
It was only through the generosity of their community — family and friends coming together to hold a fundraiser and their daycare covering tuition costs for a few months — that they were able to remain in their existing home.
Katie refinanced their home and took out a loan to consolidate debt to find significant cost savings. She also picked up some consulting work on the side to help supplement some of the lost income. The family had purchased tickets to Walt Disney World Resort before Pete’s diagnosis, and they were able to get their trip refunded to reduce additional costs.
“For at least the first two years, we only purchased what was absolutely necessary,” Katie shared. “A lot of our income was going toward paying off that initial surgery and those first few months of care. The rest of our funds went into paying for the boys’ tuition and child care. I was watching that budget week by week and month by month. Do we have the money to do what we need to do?”
Ongoing Out-of-Pocket Medical Costs
Follow-up scans uncovered tumor regrowth in Nov. 2019 and again in June 2020. Pete enrolled in a clinical trial and has received more than 300 infusions — twice weekly — since that time. Weekly hospital visits, physical therapy, epilepsy consults, and occupational therapy mean consistent medical costs even years after the initial diagnosis.
While the family has regrown their nest egg and sits in a more stable financial position today, ongoing maintenance medical expenses still take up a significant component of the family’s budget.
“There’s a lot that’s put into my husband’s maintenance bills and costs associated with the clinical trial,” Katie said. “He’s on two different seizure medications that are both really expensive, and one of them is not completely covered by insurance. We’re actually on a payment plan through the drug company.”
Financial Implications of a Glioblastoma Diagnosis
Following Pete’s diagnosis, the social worker at their local hospital went through a financial assessment with Katie.
“They asked, ‘Are you employed? What’s your income? Okay, great check,’” Katie shared. “I think there’s a great dismissiveness that if you are employed and have a steady income, you’re going to be fine. But the fact of the matter is glioblastoma is one of the most expensive cancers to treat. Even with a great steady income and decent savings, this is a really expensive, life-changing financial situation that is really difficult to plan for. I think the threshold for where financial toxicity begins needs to be put a little higher to match the gravity of the situation.”
The National Institutes of Health (NIH) describes financial toxicity, or financial distress, as “a term used to describe problems a patient has related to the cost of medical care.”
A new study published in the Journal of the National Cancer Institute found patients are paying more than ever out of their own pockets for cancer care. Brain cancer patients have the second highest out-of-pocket costs for medical services in both the initial and end-of-life phases of care relative to other types of cancers. It’s no surprise that families like Katie’s in the brain tumor community are experiencing financial toxicity.
“I belong to several Facebook caregiver groups for glioblastoma,” Katie said. “Financial advice ends up being the peer-to-peer counseling and navigation that we’re giving each other. Every once in a while, you get a question asking, ‘Can you help me navigate this health care situation?’ Nine times out of 10, people want to know, “How can I get this paid for? How do I dig out of this debt?’ It’s the thing that we’re all actually talking about.”
Out-of-pocket costs for medical services in both the initial and end-of-life phases of care for brain cancer patients relative to other types of cancers1
Of cancer patients and survivors surveyed are concerned about their ability to pay current or future costs of their cancer care2
Of cancer patients and survivors surveyed have made significant changes to their finances in response to the costs of their care2
lower quality of life
Studies have shown that patients who have financial toxicity reported having a lower quality of life, more symptoms, and more pain3
Challenges as a Young Family with Cancer
Families with young children face unique financial challenges compared to individuals who are closer to the average age for a glioblastoma diagnosis of 64.
“A lot of the advice for this disease was meant for someone at a retirement age,” Katie explained. “The first article I read — I will never forget — said now is a great time when you’re diagnosed with glioblastoma to sell off any assets you no longer need like a boat or a second home. We were making ends meet to pay our mortgage and child care. It felt really lonely not having any advice that met our needs. It’s just one of the hardest times to get hit by all of this.”
Young families with cancer do not immediately qualify for Medicare, which means they may be without insurance or on a high-deductible plan. Additionally, many have child care expenses to cover as well. Fortunately for Katie and her family, their daycare donated child care when they went without both incomes.
“You’re still paying off student loans,” Katie shared about the financial difficulties of young families with cancer. “You’re still building up your nest egg. You’re probably just starting to make your investments into your home, property, cars, and more.”
Katie’s personal life was turned upside down at a time that was critical for her career. When a patient or their loved one is faced with a diagnosis, decisions have to be made that can place advancements on hold. Even though she would gladly do it again for her family, Katie knows her earning potential was greatly affected by the decisions she made after Pete’s diagnosis.
“Having insurance was a big factor in me turning down other opportunities that could have benefited me more professionally and financially because I had to carry the insurance,” Katie shared. “Until he could get on Medicare after the two-year mark, we relied on my insurance, so me keeping jobs and figuring out where I would work was a huge part of that equation.”
Financial Stress on the Family
Finances can always create stress within couples — regardless of the family’s health status. After a brain tumor diagnosis, the family’s working dynamic can flip on its head, causing additional stress.
“I think my husband not being able to work has had negative mental effects on him,” Katie said. “I’m stressed out on some days when I have to work a full job, and I’m also picking up some side work. I might pick up extra shifts on certain weekends just to make some extra funds, and I know he feels bad that I have to do it. I don’t feel bad. I enjoy and feel empowered by it. I think the big thing we’ve done is really make sure to be open and honest with each other.”
I think the societal norm is let’s care for the patient and make sure that they are comfortable and doing well and their needs are met. I have observed that conversations about their financial well-being are grossly overlooked, especially within the system. When your finances are shaky, it creates stress between relationships and the person diagnosed.I’m sure it impacts their quality of life, and it’s the one thing that there is no medical intervention for, but just talking about it and giving some support can really make a difference. I know it has for us.