Sarah DeBord was diagnosed with metastatic colon cancer at age 34. In the years since, she has turned her diagnosis into a calling, and become an advocate for other young adults diagnosed with colorectal cancer and parents with young families facing cancer. She works as a communications and program manager for the Minneapolis-based Colon Cancer Coalition , volunteers her time with the online patient-led support community COLONTOWN , and blogs about her often adventurous experiences of living with chronic cancer at ColonCancerChick.com.
The expenses of cancer far extend what is covered by insurance, and the damage it can do can forever alter the life of a young adult with cancer.
One of the most damaging side effects of cancer is financial toxicity. Anyone who has faced cancer knows what it's like to open the mailbox and see the stack of bills endlessly roll in. But for many, especially younger adults, those bills can cause damage long after their cancer treatment has ended.
Though financial toxicity can be universal amongst patients with cancer, it hits young adult patients and caregivers differently, and can leave them swimming up (the financial) stream for years after treatment ends. Many will never be able to stop swimming as medical debt changes financial priorities and inhibits many trying to get established in life. Here are ways financial toxicity can creep into a young adult cancer survivor's life:
School: For some, cancer strikes while they are in school, and a sabbatical is required to focus on cancer treatment. This delays finishing a degree and entering the workforce to earn a living. It can also impact student loan payments, though the Deferment for Active Cancer Treatment Act was recently passed that enables students in treatment to defer student loans for up to 6 months after treatment ends — a huge load off, as missed payments and interest rates no longer pile on.
Life Insurance: Most young people aren't thinking about life insurance, mainly because they are young, single or free of the responsibilities life insurance is there to protect. They may not be working for a company that offers it, or an additional monthly premium just isn't in their budget. This means they don't have the option of cashing out a plan to give them immediate access to funds.
Cancer Insurance: These same young people that don't have life insurance are most likely not going to have cancer insurance either. Why take on an additional premium when you're young and your risk of cancer is low?
Retirement: Though some will commit to a retirement account early on in their careers, most aren't going to have been working long enough to accrue sufficient funds to make withdrawing without penalties worth the money they can receive.
Savings: Again, youth is against us when considering savings as a backup in case of emergencies. General advice says to have three months’ worth of living expenses in savings in case of a rainy day. But when that rainy day is cancer and your out-of-pocket max would eat up those savings in one big bite, savings is not something most young adults can fall back on.
Home equity: If you're lucky enough to not be scraping together rent money when you're diagnosed, chances are you haven't been living in your house long enough to have equity to borrow against. And even if you do, chances are it's not going to make a dent in the bills that are endlessly rolling in and will just leave you with more bills in the end.
Partner with second income: A two-income family is nice and definitely makes covering the bills easier. But many young adults aren't in a relationship when they are diagnosed and don't have the luxury of a second paycheck.
Loss of partner: Having a second income can be a huge help, but cancer can bring out the cracks in a relationship and often cause those cracks to completely fracture. That second income that was so helpful in paying the bills has now disappeared. It can also mean the potential loss of a partner's health insurance plan, which can be devastating or life threatening for anyone facing cancer.
Loss of future career: Because medical leave may be necessary and workplace bias is still a thing, young adults with cancer may have to stand by and watch as co-workers continue to get promotions and raises as they are left to cut back work hours or bow out of working altogether. As their peers climb the ladder, they are forced to sit and watch what should have and could have been them climbing the ladder of advancement.
Loss of income capacity: Many young adults will be able to keep working during treatment, and many have employers that are willing to work around their treatment schedule and time they need to recover. For others, not being able to work at the level or intensity they did before cancer can limit opportunities for promotions, more work hours and raises for increased workload and responsibilities.
Child care: Child care is a large financial expense for any working parent, but what happens when you need to pay for child care during treatment and medical appointments while you're not working? Not only can this be a major stressor for parents trying to navigate appointment schedules, it's also a major financial stressor.
Young-onset cancer is different, and its differences aren't just physical. This list could go on, but it's reasons like these why so many have turned to personal fundraisers to help support their medical expenses during treatment and beyond. It truly can be one step forward and two steps back for young adults with cancer and caregivers. Financial toxicity can be one of the most difficult side effects of cancer to take on. So next time you see a personal fundraiser on social media for someone facing cancer, consider it. The damage of this disease is far greater than what you may see in person.