Anyone who’s unfortunately had to deal with cancer firsthand will tell you that life does not stop when you’re diagnosed. It only feels that way. You still have to pay your rent or mortgage. You still have to buy groceries. If you have growing children, they will need new clothes, glasses, or school supplies. Your car will need gas in the tank to go to the myriad of appointments. You still have to pay for your ongoing life.

Before I continue, I want to say that when it comes to cancer care, I was — and continue to be — very fortunate. At least for now. I was diagnosed with Acute Lymphoid Leukemia in June, 2012 and we received a great deal of support.

We had help from family and friends. We had help from Everett Public Schools, the Winchester Boat Club, our Daycare Provider, and the Dana-Farber Cancer Institute to name a few. We even had help from complete and total strangers.

Even with this incredible amount of support, we still suffered some serious financial setbacks. My wife Sara had to leave work to take care of me help me get to doctor’s appointments, chemo treatments, hospital stays, and so on. Our income was slashed in half. At one point, we were three months behind on the mortgage, so we had to dip into my teacher retirement account. More than a decade after my bone-marrow transplant, *we are still rebuilding financially.

Still, we are some of the lucky ones. Many, many, patients, and their families are not.

 “Financial Toxicity”

According to Ezikiel J. Emanuel, oncologist and author of the opinion piece “Cancer patients shouldn’t be responsible for out-of-pocket costs” (STAT, May, 2023),” “Financial toxicity is the economic burden patients experience from the costs related to getting treatment for their cancer.”

Emanuel goes on to state that: “By one 2020 estimate, the average cost of medical care and drugs is more than $42,000 in the year following a cancer diagnosis. To complicate matters, up to 85% of cancer patients leave the workforce during their initial treatment. Consequently, more than 40% of patients spend their entire life savings in the first two years of treatment, while roughly 30% of Americans with a cancer history report having had problems paying their medical bills, having to borrow money, or filing for bankruptcy protection because of their cancer. In addition, informal caregivers, often family members, also experience out-of-pocket and opportunity costs, estimated to be upwards of several thousand dollars per month.”

Financial Trouble Can Impact Mortality Rate

According to Emmanuel, financial toxicity can impact treatment outcomes, as some people will put off treatment, make treatment changes, or even opt to not get treatment because of finances. It even has an effect on their mortality rate.

According to the article “In America, Cancer Patients Endure Debt on Top of Disease,” by Noam Levey, (KFF Health News, July, 2023) “about two-thirds of adults with health care debt who’ve had cancer themselves or in their family have cut spending on food, clothing, or other household basics, a poll
conducted by KFF for this project found. About 1 in 4 have declared bankruptcy or lost their home to eviction or foreclosure.”

According to the Centers for Disease Control, the economic burden of cancer care are quite significant “both nationally and for individual cancer survivors. In 2019, the national patient economic burden associated with cancer care was estimated to be $21.09 billion. This estimate includes patient out-of-pocket costs of $16.22 billion and patient time cost of $4.87 billion.” And the cost varies by “age, stage at diagnosis, and phase of care.”

For example, out-of-pocket costs per person were generally higher among adult cancer survivors aged 18 to 64 than among those 65 or older. Among adults 65 or older who had Medicare coverage, out-of-pocket costs were generally higher for those diagnosed with advanced cancer than early-stage disease.

“On average,” states the CDC in their “Topic is Cancer” blog, “adult cancer survivors experienced about $300 in time costs because of cancer care each year. This cost was higher among cancer survivors aged 18 to 64 than among those 65 or older. It was also higher among adults who had been diagnosed in the last 2 years compared to those diagnosed more than 2 years ago.”

What to do?

Obviously, I’m not a healthcare policy or insurance expert by any stretch, and I know health care is a very complicated subject. And I am glad that there are new initiatives to make health care costs more transparent. Still, it’s hard not to feel that in many cases, the best way to survive cancer is to be lucky, wealthy, or both.

Fortunately, many people feel the same way. That is why there are many charities that assist patients with the cost of living through cancer treatment.

Cancer.net has an excellent financial resources page. The American Cancer Society also has a financial support page, as well as Cancercare.org. And that’s just for starters.

If anyone has a story they want to share about their treatment please reach out to me at roadswevetraveled@gmail.com.