The Financial Toxicity of Cancer Care: Pay for Treatment or Buy Food

Getting through cancer treatment can be physically and emotionally challenging. When medical bills are added to the mix, you may feel overwhelmed and helpless. In the U.S., even with health insurance, cancer care can be expensive. When 42-year-old Jenny Smith-Garcia of Miami, Florida, was diagnosed with breast cancer in 2021, she had health insurance through her job. But she still faced massive medical debt.

In 2014, U.S. cancer patients paid nearly $4 billion in out-of-pocket costs. The 2018 total healthcare-related cost for cancer was more than $112 billion in the U.S. Not surprisingly, this number is expected to increase. The American Association for Cancer Research (AACR) estimates that cancer care costs will exceed $245 billion by 2030.

Sadly, faced with astronomical medical expenses, some people choose to delay or stop cancer treatment.

What factors affect how much cancer treatment costs?

If you’re diagnosed with cancer, the amount you pay out of pocket depends on several factors:

• Whether or not you have health insurance.
• What your health insurance covers.
• Whether you have a high deductible plan with high out-of-pocket costs.
• The type of cancer treatment recommended.
• The length of treatment.
• Where you live and receive treatment.

For example, many specialists may be involved in your care. You may have a copayment for each of your doctor’s appointments. The often-numerous tests needed may also require a separate copayment or coinsurance amount. If your plan has a deductible, you must first pay that amount out of pocket before your health plan begins paying any costs.

Common treatments for cancer, such as surgery, chemotherapy, and radiation therapy, may create an avalanche of debt. You may be surprised to learn that your insurance provides no or limited coverage for needed prescription drugs. You may pay a higher coinsurance or copayment if you receive treatment at a hospital-based cancer center instead of a stand-alone outpatient facility or a doctor’s office. “I had health insurance, and not once did I worry about being able to pay for my cancer treatment. I was more focused on the side effects of chemotherapy and surgery,” Jenny recounted.

The hidden costs of cancer care

Medical bills are obvious costs of cancer care. But did you know there are indirect expenses associated with cancer treatment? They’re called the hidden costs of cancer care and are just as significant.

For example, when you travel to and from your appointments, you may pay more for gas, tolls, parking, or public transportation fares. If you receive your cancer care far from home, you may incur additional expenses for lodging and other travel-related fees. These costs are often not covered by health insurance.

Losing your job or receiving smaller paychecks because you’re unable to work your regular schedule are also hidden costs of cancer.

“With no job and no income, I couldn’t afford to pay for my cancer treatment,” recalls Jenny. Due to the side effects of chemotherapy, Jenny could not work for several months and eventually lost her job as a bank teller. “I started falling behind on my mortgage payments,” she says.

Affording mental health counseling to help you cope with cancer can become a burden. You may have difficulty paying for daily living expenses – like childcare and utilities – if you no longer have a source of income.

Financial toxicity: an overlooked side effect

The physical side effects of cancer, like fatigue, nausea, and vomiting, are well known. But the financial burden associated with costly cancer treatment is just as significant.

Researchers sought to understand how medical expenses affect patients and their families. They coined the term financial toxicity, which refers to the harmful effects of expensive medical treatment on a patient’s health.

For example, with three children, no health insurance, and medical bills piling up, Jenny remembers how much stress she was and continues to be under. She needed treatment, could not work, and her husband’s salary wasn’t enough to make ends meet. And because she lives in Florida – a state that has not expanded Medicaid under the Affordable Care Act (ACA) – she did not qualify for Medicaid.

Jenny recalls how the anxiety of mounting bills impacted her health and the impossible choices she faced. “Here I am, dealing with the physical effects of chemotherapy, barely able to get out of bed some days, and now I’m having added mental and emotional stress because I have to worry about how I’m going to pay my bills and feed my kids. I thought about stopping treatment several times. It shouldn’t be that way.”

Yet, still drowning in debt, she considers herself fortunate that her husband was able to secure a second job which allowed her to continue her treatments. “Not everyone has that opportunity,” she says. “I was blessed.”

Where to get help

You may feel uncomfortable talking about your concerns about cancer care costs with your healthcare providers. After all, the fear of being turned away and the awkwardness of discussing your financial situation with others may be upsetting.

Speaking up about your financial concerns early on is one of the most important things you can do. Most cancer facilities have a patient financial services department or financial counselors who can guide you and help you lower your medical costs. Oncology social workers are very resourceful, and so are nurse navigators.

Many health insurance companies have case managers who can help connect you with financial resources and ensure you get appropriate medical care.

Looking for financial help while dealing with cancer treatment can be exhausting. Below are some organizations you may reach out to.

The American Cancer Society can assist with finding local resources.

CancerCare can help with financial assistance and counseling.

Find available financial resources near you through the Cancer Financial Assistance Coalition.

For help with out-of-pocket expenses, contact the Patient Access Network (PAN) Foundation.

The Patient Advocate Foundation has a copay relief program that assists insured patients in financial distress.

HealthWell Foundation helps underinsured individuals afford medical treatments.

Get lodging help while receiving medical treatment away from home through the Healthcare Hospitality Network.

The American Society of Clinical Oncology (ASCO) has a list of additional financial resources.

Drug manufacturers usually have patient financial assistance programs or grants that can help offset some, if not all, prescription medication costs.

You don’t have to do this alone. Don’t dismiss reaching out to family, friends, and your church community for assistance – financial or otherwise.

If you don’t have health insurance, consider getting affordable health coverage from the health insurance marketplace. You may even qualify for help to pay for the monthly cost of your insurance.

Questions to ask

When she lost her insurance, Jenny said she had to tell her oncologist that she couldn’t afford to pay for her treatment. And she recalls how relieved she was that her oncologist and his office financial counselor were ready to work with her so she wouldn’t have to put off the life-saving chemotherapy she needed.

Here are some questions you can ask your healthcare providers to help you understand and plan for the upcoming medical costs:

• Is there a financial counselor or social worker who can help me apply to assistance programs?
• Can I get an estimate of my expected out-of-pocket expenses?
• Are you part of my insurance network?
• How much of the cost will my insurance pay if I receive care in a hospital-based cancer center versus an outpatient clinic?
• Can we set up an affordable payment plan?
• Are there other appropriate but less expensive treatment options to treat my cancer?

The answer to these questions will help you be better prepared and avoid the painful dilemma of choosing between receiving cancer treatment and financially supporting your family.

Today, after qualifying for some patient financial assistance programs, Jenny is still paying off her nearly $25,000 medical debt.

Despite having insurance, paying for cancer treatment can cause financial hardship. You may be tempted to put off your medical care or skip treatment altogether, but help is available, and it’s perfectly okay to speak up. Talking to your healthcare provider is a good place to start.