Katie and Pete M. faced daunting medical bills and other expenses after Pete’s glioblastoma diagnosis. Were it not for a spaghetti dinner fundraiser and crowdfunding from family and friends in those early months, the couple would have been forced to sell the home they were so excited to move into only months prior.
Pete and Katie are not alone in experiencing financial challenges following a life-changing diagnosis. A recent American Cancer Society survey found that 71% of cancer patients and survivors surveyed had made significant changes to their finances in response to the costs of their care.
In the wake of a brain tumor diagnosis and possible job loss or reduction, it’s essential to take steps to navigate the financial challenges that come with a diagnosis.
Review the State of Your Finances
Medical bills will come in quickly following a diagnosis and possible surgery and treatment. Take a moment to log into your critical accounts — credit cards, mortgage or rent, utilities, loans, tuition, etc. — to grasp where your finances stand.
“My first call with a cancer patient or caregiver is just getting a lay of the land and trying to get an inventory of their resources,” said Aaron Parrish, who volunteers as a pro bono certified financial planner with Family Reach. “What is your health insurance like? What deductible are we looking at? What about disability insurance? Where are you in terms of estate documents? What do we have in terms of bank accounts? What else can we tap into? Just get it all in one place so you can see what you have to work with and come up with a plan.”
Suppose the patient with a brain tumor is usually the person to manage the family finances. In that case, you may need to uncover login information, review or create a budget, set up or halt autopayments, and determine necessary expenses at this juncture.
Meet with a certified financial planner to help guide you on the next steps and provide resources. Organizations like Family Reach can connect cancer patients with a pro bono planner, who can help you take an inventory of your current financial situation and make personalized recommendations.
Can you delay any payments? For example, you may qualify to defer federal student loan payments while being treated for cancer and up to six additional months following treatment.
Are there any expenses that you could cut? For example, you could cancel or place a hold on nice-to-have subscriptions or memberships or request a refund for a previously scheduled trip.
Are there ways to cover medical bills without putting them on your credit card? “Credit cards can accrue really exorbitant interest, and there may be better ways to do that where the interest won’t balloon to such a size,” Aaron said.
If you pay tuition for child care or school, contact the school or center to see what arrangements could be made. “Sometimes people are willing to work with you,” Aaron shared. “A person I recently worked with communicated their situation to their kids’ private school, and the school is covering the cost for the year.”
Talk to your social worker or patient navigator about your financial concerns. Consider asking these financial questions. Ask who you can speak with to set up a payment plan for out-of-pocket treatment expenses.
Request a list of medications that your health care team may prescribe. You can work with your insurance provider to learn which prescriptions will be covered. For medications that will not be covered by insurance, look for alternate means of support. “We received a $6,000 bill for one month of seizure medications,” Katie said. “I started to ask questions to see how to not pay for this out-of-pocket expense right away. I talked to the social worker in the epilepsy department at our local hospital. We’re actually on a payment plan through the drug company now.”
As medical bills start to arrive, carefully review them to ensure there aren’t any errors (e.g., duplicate charges). “There was $3,000 in medical bills that were errors that I had to fight with the insurance company to get overturned,” Katie said.
Consider your options should you have a prolonged period of reduced or no income. “Can we do a loan or distribution from their retirement accounts? Is there equity in the house that we can potentially tap into? We want to have something lined up in that situation,” Aaron said.
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, so it’s important to address your budget and adjust expenses even in the throes of cancer treatment. The sooner you start looking for resources and assistance, the more it can help you manage the situation.
“When we met with the pro bono financial planner, that was really helpful,” Katie explained. “I wish I would have met with them once I got my bearings a couple of months into it instead of two years later. I could have made some better financial decisions earlier. Nobody wants to talk about debt and bills, so to have someone I could talk to and figure out the financial decisions that will make sense to us was helpful. Should I pay off that long-term bill? Should I try to build up my nest egg and savings, or do I pay off debt sooner?”
Review Your Benefits
If the patient and primary caregiver work, you will want to review their company’s benefits in an employee handbook and speak with their HR representative. Any gap without pay will influence your financial circumstances, so you want to be clear on what that will look like moving forward.
“Even with great insurance, we had five-figure bills,” Katie said. “Shortly after my husband got home from surgery with radiation and chemo coming up, I was trying to figure out, ‘How are we going to pay for this? How soon do I need to get back to work? How long can I take off to be available?’”
Things to Consider:
How much paid time off can you take, if any, before it becomes unpaid leave?
Does your company permit colleagues to donate vacation or sick time to supplement your PTO for the year?
Do you qualify for FMLA leave? Is it best to use it in one 12-week stretch or spread it out over 12 months?
What workplace accommodations can your employer provide when you can work, like flexible work hours to minimize the time missed due to appointments?
Does your company offer a complimentary Employee Assistance Program (EAP), which can help you at no cost? Many EAPs offer toolkits and other resources for handling serious health care diagnoses, ranging from emotional well-being help to practical advice related to financial and legal matters. By calling your company’s EAP, you may receive confidential financial coaching from their staff, or they may refer you to an external resource who can support you.
Look for Community Resources
It may feel like you’re on your own in this situation, trying to navigate through finances and insurance. Still, some organizations and resources may be able to help by providing direct financial assistance or offering financial coaching.
“I spent a lot of late nights searching keywords on Google,” Katie shared. “I was looking for organizations that give out grants and financial aid. Initially, I was looking for advice on how do I budget for what I don’t know — potentially two years of this or five years of this. When we were later trying to navigate being in a clinical trial, we found clinical trial websites and resources that were specific to the need to cover major bills associated with the clinical trial. We knew some adaptive tools and technology would be helpful for aphasia, so we found an organization that supported patients with aphasia.”
It can be hard to ask for help, especially if you’re unsure where to start, but it does make a difference.
According to the National Cancer Institute, “a review study documented that approximately 60% of people across a wide range of studies reported positive attitudes about cost-related discussions with their health care providers. Despite this finding, less than one-third of patients have had these discussions.”
Ideally, your health care provider would approach this topic with you, but it may fall to you to bring it up at an appointment or with a social worker. The same review study suggested that discussing costs with one’s health care team was associated with improved patient satisfaction and lower out-of-pocket expenses.
Additionally, sharing a diagnosis with family and friends may motivate them to start a crowdfunding campaign that can help provide much-needed cash flow in those early days when you’re potentially operating on a reduced income.
“Some people don’t want to ask for help, and I understand that,” Aaron shared. “I had one caregiver I worked with who did a crowdfunding page, and a significant amount of help came through. It allowed her to spend more time with her son with maybe a little less stress about where the money would come from.”
Most importantly, take action now to avoid paying extra money in the long run and put yourself in the best financial position possible.
“The last thing you want to be doing after a brain tumor diagnosis is trying to figure out finances,” Aaron said. “It’s easy for someone to want to bury their heads in the sand. As long as you’re paying the bill, things aren’t going to be cut off. Depending on how you’re accessing the money, you might end up paying more in the long run, whether in interest or tax. There are going to be penalties, whether it’s in interest or paying more tax than necessary.”
National Brain Tumor Society does not provide legal, tax, or financial advice. We strongly recommend that you consult professional advisors on all legal, tax, or financial matters, including estate planning considerations. This communication (including any attachments) is not intended or written to be used, and cannot be used, for the purpose of avoiding tax-related penalties.