Cancer and financial toxicity
Hester Hill Schnipper, LICSW, OSW-C Program Manager Emeritus, Oncology Social Work
JANUARY 14, 2020
In the first moments of hearing a cancer diagnosis, people don't usually think of expense. Probably most of us, in those first moments of panic, would actually think something along the lines of: I don’t care what this costs! Make me well!
The phrase financial toxicity means all the money problems that you might have related to cancer treatment. Not surprisingly, many studies have found that people going through cancer are more likely to experience serious financial issues than others. Other studies indicate that cancer survivors continue to struggle with finances as they recover, return to the work force, and deal with bills. Did you know that medical bills are the most common cause of personal bankruptcy? Obviously, the level of financial difficulty you might experience is related to many factors in your household, including other resources, savings, family help, benefits, and whether you can continue to work.
As a little time passes, the financial realities become painfully clear. The squeeze comes from two directions: the bills and expenses related to cancer care and the diminished income while going through treatment. Let's think first about the reduced income that affects most people to some degree. If you are fortunate and have an understanding employer and good benefits, the financial hit may be less. It helps to have paid sick time and available disability insurance. Disability insurance usually pays only up to 60% of income, but it is not taxable, and it is a big help. Unfortunately, it you don't already have this benefit, you can't buy it now to cover this situation. Note: you probably can buy it in the next round of signing up for benefits, and I would strongly encourage you to do so.
Not everyone has such fortunate employment circumstances. All too many people don't get paid if they don't come to work. Others have limited sick time available and little flexibility with work schedules. I remember a nurse who worked at a large urban medical center where he anticipated the benefits would be good. Unfortunately, it turned out that, since he was employed as a per diem worker, none of those good benefits were available during his cancer treatment. Blessedly, many of his colleagues and co-workers were able to donate some of their own sick time to him, and that cushion helped him and his family get through the difficult months.
If you know that your salary is going to be reduced or absent for a while, talk ASAP to someone at the hospital or clinic who can direct you to available institutional or community resources. At BIDMC, a good place to start is with an oncology social worker who likely will refer you to a community resource specialist, patient navigator, or someone in the appropriate financial office. Cancer Care, a wonderful organization based in New York, publishes an annual guide of resources.
Having cancer is expensive. Even if you have good insurance, there are deductibles and co-pays, co-insurance, and uncovered medical expenses. There is the cost of transportation to get to the hospital, parking once you are there, perhaps additional childcare or household help. The overall expense is also related to the kind of cancer and treatment that you will receive. If treatment will extend over many months, it will be harder than if you need surgery only and can then concentrate on recovery and a return to work.
For many people, it is the cost of drugs that is the biggest hit. Especially for some of the newer cancer treatments, monthly co-pays can easily be in the hundreds of dollars. Trying to reduce their own costs, insurance companies may tier drug costs and apply higher co-pays or deductibles to some drugs than others. If you find yourself in this situation, talk to your doctor. This may feel difficult and scary, and of course your primary concern is receiving the best available treatment. However, it is possible that there is another option that will be just as effective and less costly.
Many pharmaceutical companies have benefits for patients who can't otherwise afford their drugs. These programs do have income limits, but it is worth inquiring.
For a longer discussion of this important issue, you might want to look at this publication from the National Cancer Institute.
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