When I was diagnosed with inflammatory breast cancer, the first thing my husband and I did was panic about whether I would physically survive cancer. The second thing we did was panic about whether we could financially survive cancer.
We had just moved to a new city and bought a house that presumed two incomes. Would we be able to keep the house if I couldn’t work? We had reasonably good health insurance, but what about the extra expenses that cancer adds to the budget? We spent a lot of time and energy worrying about financial scenarios that might decimate our savings and trying to think of how we might overcome disaster.
Maybe in some ways it was easier to focus on the possibility of losing our house and savings, because that was not as horrible as the thought of my losing my life–a real possibility with my Stage IIIB diagnosis of an aggressive cancer. But financial ruin is all too real for many families affected by cancer. One study found that bankruptcies related to unpaid medical bills affected nearly 2 million people in 2013. In fact, medical bills are the number one reason for bankruptcy filings. The cost of cancer treatments is so high that researchers are beginning to study a new concept: the financial toxicity of cancer.
To protect yourself financially, what do you need to do to if you have been diagnosed with breast cancer?
Take an inventory of your expenses and resources. Talk to your health insurance company. If you have been healthy until now, you need to learn the language of insurance. Terminology like deductibles and co-insurance can be confusing. Ask exactly what your insurance will pay for. What is excluded? It may be hard to estimate what your medical bills will be because there will probably be changes in your treatment plan along the way, but try to get a rough estimate of what your costs will be. Talk to someone in the oncologist’s business office to get an idea about what you are facing. Fortunately, pre-existing conditions will no longer keep you from getting health insurance because of the Affordable Care Act, but if your insurance has a high deductible, you may have a five or ten thousand dollar starting point for your medical expenses. Prescriptions may not be included in your insurance, or your copays for them may add up quickly, especially if you are in a state that doesn’t have parity laws for oral chemo drugs.
Once you have that rough dollar figure, look at your assets: work income, savings, life insurance cash values, equity in your home, and so forth. Talk to the human resources director where you work to find out what possibilities there are for paid leave, short-term and long-term disability. Disability pay is usually less than your regular pay check, so you need to know how much income you can expect.
Make a plan. Take your expected expenses and divide by 12. This is what you need monthly over the next year. If you are in the majority of breast cancer patients who will have surgery and perhaps radiation early in your treatment and no treatment for the rest of the year, you will have heavy expenses at the beginning of treatment, probably more than you can get out of your monthly budget. However, thinking about this cost over the entire year can help you keep it in perspective. This is where you can decide to dip into savings or put the radiologist’s bill on a credit card because you know you can pay that money back over the course of the year.
When I have had hospital bills that were higher than I could pay in a month, I have always found the people in the business office helpful in letting me set up a monthly payment plan at an interest rate that was lower than my credit card. Never, ever just ignore the bills that keep pouring in. Always talk to someone in the business office and explain your intention to pay the bill and discuss options for doing that. As you plan, think about where you can cut back in your monthly spending to find money for your medical expenses. Most of us have areas where we could trim a bit. Even a dollar cup of coffee at a drive through on your way to work is twenty dollars a month that you could save by making your coffee at home.
Ask for help. Suppose your monthly medical expenses are way more than you will be able to manage. If your treatment will be extended or if your employer doesn’t have good short-term disability benefits, you may be over your head financially. You are going to need help. Start with the social worker at the hospital. Bring your information about your resources and expected medical bills and ask about what resources are available to help you. The social worker will know about local agencies that offer financial assistance to cancer patients. The website of the American Association of Cancer Research has a page with tips and links to organizations that can help,**** and the National Cancer Institute offers a list of organizations that provide financial resources for cancer patients. It may turn out that you are eligible for Medicaid or a state program to help with medical bills. In addition to the hospital social worker, there may be a person in your oncologist’s office designated to help patients link to resources. Do not be afraid to ask. It may be embarrassing, but asking before you are buried in bills you can’t pay can alleviate your stress, and the people who can help you will be impressed that you are dealing with your financial situation proactively.
Keep accurate records. Keeping up with insurance payments and medical expenses can sometimes seem like a full-time job. The easiest way to do this if you are organizationally challenged like me is to take a folder and put every bill and explanation of benefits (EOB) from the insurance company in a folder with the oldest on the bottom and the newest one on top. Directly on the folder or in a notebook you carry in your purse, record every conversation you have with the insurance company or medical billing office listing the date, the phone number, the name of the person you talked to, and the outcome of the conversation. It helps tremendously when you need to talk to the next person to be able to give the details of your earlier conversation. If you are more organized than I am, you may want to have separate folders for each provider.
The important thing is that you have records you can find easily so that you can spot possible mistakes like double billing by the provider or errors on your part like a missed payment. Writing appointment details on a calendar even when you are sure you will remember an appointment is another way to double check because most bills will list the date of service, and your calendar will help you keep track. Accurate records will help you provide the information needed to apply for some grants or to take advantage of possible tax benefits if your medical costs are high enough compared to your income.
Tell your doctor you want to spend your health-care dollars wisely. When the doctor writes a prescription, ask if there is a generic version that would be just as effective. When she orders an expensive imaging test, ask what information she hopes to learn and how that information might affect your treatment plan. Is there a less expensive test that could provide the same information? I personally find this very hard to do. I tend to assume that if the doctor orders something, I need it and have to go along with it no matter the cost. However, a health insurance plan with a high deductible helped me start asking more questions, and I found my doctors open to planning imaging tests with some consideration for my budget once they knew I was concerned. In October 2013 the American Society of Clinical Oncologists wrote a report with findings that oncologists sometimes prescribe more expensive drugs for nausea and order more imaging tests for follow-up care than necessary.
The newest drugs are usually the most expensive, but they are not necessarily the most effective. Letting your doctor know that you want to keep your costs as low as safely possible is a good strategy.
Cancer brought our family extra expenses despite a good insurance plan, so we had to manage our pennies carefully. However, our worst fears were not realized. I was able to work and never lost income because of my cancer. Careful planning can help your family make the most of every health care dollar and get the help you need when necessary. You can concentrate on getting well rather than on possible financial toxic side effects of treatment.
Coping With Cancer: Financial, Insurance and Legal Information. National Cancer Institute. Accessed Feb. 2, 2014 https://www.cancer.gov/cancertopics/coping/financial-legal#
Information about Financial Help. American Association of Cancer Research. Accessed Feb. 2, 2014 https://www.aacr.org/home/survivors–advocates/information-about-support-groups,-clinical-trials,-financial-help-and-fundraising/how-to-find-financial-aid-and-advice.aspx
Johnson, P. Overused Cancer Treatments: Are You Adding to the Problem? HealthCentral. Dec. 31, 2013. Accessed Feb. 2, 2014 https://www.healthcentral.com/breast-cancer/c/9692/165408/overused-treatments
Mangan, D. Medical Bills Are the Biggest Cause of US Bankruptcies. June 25, 2013. Accessed Feb. 2, 2016 https://www.cnbc.com/id/100840148
Mulcahy, N. New Adverse Event in Cancer Treatment: ‘Financial Toxicity.’ Medscape Medical News. April 25, 2013. Accessed Feb. 2, 2014 https://www.medscape.com/viewarticle/803111.
Oral Parity in Chemotherapy Drugs. Issue Backgrounder: ASCO in Action. Accessed Feb. 2, 2014 https://www.asco.org/sites/www.asco.org/files/oral_parity_ib_final_pdf.pdf
Zafar, S. The financial toxicity of cancer treatment: a pilot study assessing out-of-pocket expenses and the insured cancer patient’s experience. Oncologist Feb. 26, 2013. Accessed Feb. 2, 2014 https://www.ncbi.nlm.nih.gov/pubmed/23442307.
Phyllis Johnson is an inflammatory breast cancer (IBC) survivor diagnosed in 1998. She has written about cancer for HealthCentral since 2007. She serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. Phyllis attends conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. She tweets at @mrsphjohnson.