For many survivors, getting cancer treatment has been a matter of life and debt.
Almost one in four American cancer survivors said they struggled to pay medical bills, according to a new CDC report, and one third have worried about their out-of-pocket medical costs. The average out-of-pocket spending for the estimated 16.9 million cancer survivors in the country is also significantly higher (about $1,000 a year) than the $622 that people without a cancer history have spent annually. What’s more, 25% said they had to borrow money, go into debt or file for bankruptcy to cover medical expenses.
When Beth Stebner was rocked by an ovarian cancer diagnosis just six months before her 2017 wedding, she was hit with a $130,000 hospital bill for emergency surgery on the grapefruit-sized tumor that had ruptured on her right ovary. While her medical resident fiance’s health insurance covered all but a few thousand dollars of that tab, what really hurt was Stebner missing work.
“I had just started a new job and didn’t qualify for any sort of disability leave yet, meaning I had to survive on the [New York] state-sanctioned $170 a week — and that’s before taxes — for my six-week recovery,” Stebner, a 32-year-old Brooklyn writer, told MarketWatch. “Luckily, we had the support of truly amazing friends and family who were generous with their time and their finances to help us get through. Still, we ended up having to take a good chunk of change out of our savings to cover my lack of income and fertility-preserving IVF. ”
Many cancer survivors find that the lingering side effects of their treatment include dwindling savings, mounting debt and difficulty doing their jobs. And millennials are hit particularly hard by the cost of cancer treatment, according to a recent study being printed in the journal Cancer, which found that risks for debt, time off (paid and unpaid) and work-related physical and mental impairment increased in young adult cancer survivors.
Colorado Cancer Center researchers surveyed 872 survivors ages 18 to 39 in one of the largest studies of work-related risks in young adult survivors ever conducted. They found that 14.4% borrowed more than $10,000 for treatment, and 1.5% said they or their family filed for bankruptcy over their illness and treatment. And those who underwent chemotherapy were more than three times as likely to borrow more than $10,000. (The National Cancer Institute notes that new chemotherapy and supportive drug-based treatment often tops $10,000 a month.)
This backs a 2016 report that found adolescent and young adult cancer survivors have higher annual medical costs than those without cancer history ($7,417 vs. $4,247); pay $2,200 a year in lost productivity costs due to illness and disability from their cancer and its treatment; and wind up with lower family incomes compared with similar-age adults without cancer.
Related: Adults who survived childhood cancer need financial checkups too
More than 42% of the 9.5 million people diagnosed with cancer between 2000 and 2012 said they depleted their entire life’s assets in two years, according to an American Journal of Medicine study published last year. A previous white paper by the national nonprofit Family Reach also found that adult cancer patients are 2.65 times more likely to file for bankruptcy than people their same age without cancer. The Pink Fund warns that 50% of women under 40 diagnosed with breast cancer pay $5,000 to treat it, and one in four drop $10,000 or more.
So it’s not surprising that some seven million cancer patients and survivors in the U.S. are still working during and after their treatment, according to data compiled by the University of Colorado Cancer Center. Working not only provides a sense of normalcy to sustain survivors; it’s also the source of income and health insurance vital to covering the cost of treatment.
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But returning to work is a challenge in itself. More than half (58%) of the survivors in the new Colorado Cancer Center study said that their cancer or its treatment interfered with the physical demands of their job, and 54% said it hurt their ability to complete mental tasks at work. The effects were worse if they underwent chemo; those patients were more than three times as likely to report job-related mental impairment than survivors who didn’t do chemotherapy. The Pink Fund warns that between 20% to 30% of women will lose their jobs or are unable to work due to a disability stemming from their breast cancer treatment.
Anoushka Mirchandani worked through her treatment when she was diagnosed with Stage 4 Hodgkin lymphoma two years ago, which included six months of chemotherapy followed by three months participating in a clinical drug trial.
“For the first half of it, I was perfectly fine — but then toward the middle, my memory wasn’t as sharp as it used to be. My doctor called it ‘chemo brain,’” Mirchandani, 31, who works in investment management in New York City, told MarketWatch. She struggled to recall things, like what an email had said, so she started playing memory games on the Peak app an hour a day.
Then came the physical effects towards the end of her treatment, which forced her to take time off. “I was on a cycle of four different drugs, including one that was hard on my lungs. I couldn’t breathe. I couldn’t walk,” she said. “I’m so lucky that my boss was so supportive.”
And the effects don’t necessarily end with treatment. While Mirchandani has been in remission for just under two years, she’s still suffering side effects from the chemo; she’s developed asthma and nerve issues, like her fingers turning blue at the slightest hint of chill.
Related: Cancer survivors like Shannen Doherty share the struggle to keep their jobs through treatment
Then there’s the financial aftershocks. She was fortunate that her insurance covered her treatment after she paid her $4,000 deductible. Insurance also covered about 80% of the tab for freezing her eggs, which she needed to do in order to still have children after the chemo. But she still had to pay $15,000 out of pocket for the egg retrieval process, which includes hormone therapy and a surgical retrieval procedure. She will also pay $1,500 annually to store them. And then there’s those follow-up appointments to make sure she’s cancer-free, which run about $500 a visit, four times a year, which she pays out of pocket because her deductible is so high.
“I wish treatment was cheaper. It was a burden for me financially, but I’m very lucky that I work in New York in the finance industry with a bigger paycheck,” she said. “My sister is teacher, and I cannot for the life of me imagine how she would possible be able to do this by herself without our parents’ support.”
Samantha Watson, a two-time young adult survivor from Boston, was first diagnosed with bone cancer her senior year of college, and then developed blood cancer from her chemotherapy a year later.
“I was fortunate to not be left with massive debt after (my first) cancer treatment because my mom, an oncology nurse, knew how to advocate and fight back when we got billed almost $300,000 after my bone marrow transplant,” she told MarketWatch. “But when I was diagnosed the second time in 2001, I was 23 years old, had finished college, and hadn’t yet started working, so I was very much in professional no-man’s land.”
Related: How to fight the financial toxicity of cancer treatment
This led her to launch The Samfund nonprofit to provide direct financial assistance and free online support and education to young adult cancer survivors. She recalled that when she showed up for work about a year after her treatment, her body and mind were still recovering. “I was struggling with chemo brain (though at the time it wasn’t entirely recognized or validated, so all I knew was that I constantly felt like I was in a fog),” she said. “All of a sudden, I was forgetting everything. One day at lunch, my boss asked if I could give her a ride to the train after work. At 5 p.m., I left without her because I had already forgotten. Another day, I missed a deadline to submit a proposal and almost cost our organization a ton of money.”
She learned to write everything down, and to paper her desk with Post-It notes and a calendar to keep track of her to-do list and appointments. She also credits her employer for being supportive, which is why she’s become an advocate for young adult cancer survivors.
Her colleague Michelle Landwehr at The Samfund noted that more than 70,000 young adults are diagnosed with cancer each year, and they have struggles unique to their stage of life. “They have little in the way of savings, lack job seniority or security, and are often already living paycheck to paycheck before being hit with an incredibly expensive diagnosis,” she said. “We’ve heard from lots of young adults who are unable to work during treatment, so either have to quit or are fired (despite it being illegal to do so), and are struggling to get by on social security disability, if they’re lucky enough to be approved. Some cannot go back to the work they were doing once they finish treatment, so have to figure out a new plan and somehow finance continuing education amidst their medical bills. Others struggle with ‘chemo brain,’ finding yet an additional hurdle to returning to ‘normal’ life.”
The SamFund has awarded $2 million in grants for a wide range of needs, including living expenses, medical bills and education expenses. It has also partnered with Triage Cancer to create CancerFinances.org, a free online decision-making tool for those seeking advice on common financial issues around cancer. The Cancer and Careers nonprofit guides employers and employees through working during and after cancer treatment, and has also created a free online toolkit for managers with step-by-step instructions for supporting employees affected by cancer at WorkplaceTransitions.org. The Deferment for Active Cancer Treatment Act bill was also put before Congress last fall, which would give cancer patients an automatic deferment on their student loans.
This article was originally published in February 2019, and has been updated with the new CDC debt data.
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