Cancer and Financial Toxicity

Hester Hill Schnipper, LICSW, OSW-C Program Manager Emeritus, Oncology Social Work

APRIL 03, 2019

You may be aware that the phrase financial toxicity is widespread in Cancer World; it is even used in articles in medical journals. The rising, sometimes astronomical, cost of drugs and the high cost of all kinds of medical care can stretch all budgets. People who are uninsured or have minimal health care insurance are worried from the start. People who have medical insurance they thought was good are sometimes shocked by deductibles, co-pays and other uncovered expenses.

Approximately one third of cancer survivors have gone into debt, and 3 percent end up filing for bankruptcy because of medical bills. Of those who have gone into debt, more than half had unpaid bills of $100,000 or more. As you would expect, cancer patients who are younger, have lower incomes and public health insurance were most likely to experience high debt or file for bankruptcy. The biggest bills are most often related to surgery or to ER visits. It can also get very confusing when insurance, for example, covers the cost of a hospitalization, but does not cover some of the related expenses: an individual doctor’s charge or some tests or an ambulance that was needed to get to another building or facility.

Sometimes people delay care or don't fully comply with treatment because of costs. If a prescription medication is expensive, people may reduce the recommended dose, taking a pill every other day instead of daily. While this is completely understandable, it can be dangerous for your health. It is unfortunately true that many of us feel ashamed to admit that we are struggling with bills or awkward asking about costs. It seems that talking about money has replaced talking about sex as Number One Uncomfortable Conversation.

While working on another recent piece, I was told that some reviewers felt that telling newly diagnosed cancer patients that cancer is expensive was too distressing and should not be part of the essay. I was shocked. To me, this seems not so different than not mentioning that some chemo drugs cause hair loss or that they will likely need to take some time off from work to recover from surgery. There is so much that is scary about cancer, and adding the realities of finances is only of them. My suspicion is that the financial worries, for most people, are not at the very top of the worry list at the start. When first given a cancer diagnosis, most of us worry about staying alive and how the possible impact on our children. As a little time passes, and as bills begin to arrive, finances may well become more worrisome.

If you are facing big medical bills, there is some help available. First, don't just let the bills pile up and ignore them; they won't go away, and the situation will only get worse. Call the hospital or doctor's office (there will be a phone number somewhere on that bill) and ask about negotiating the bill or about payment plans. Generally, they will try to work with you to come up with a plan that feels possible. There are some sources of financial assistance for cancer patients; ask to speak with a social worker or patient navigator or community resource specialist for suggestions. You might also look at this excellent list prepared by Cancer Care.

Be aware that the hospital is never going to withhold care because of money. You will get what you need. It is widely known that cancer costs are a concern for almost everyone, and none of your caregivers will be surprised by your questions. Don't worry alone; remember there is help available.

Have you had financial worries due to cancer bills? Share your story in the BIDMC Cancer Community.