The High Cost of Breast Cancer Care
Hester Hill Schnipper, LICSW, OSW-C Program Manager, Oncology Social Work, Emeritus
AUGUST 21, 2018
Financial Toxicity May Accompany Disease
In a just world, no one with cancer or any other serious illness would have to worry about paying the medical bills. It is more than enough to worry about surgery and chemotherapy and hair loss. Adding genuine concerns about uncovered expenses and where to find the necessary money can be overwhelming. Many people can’t work full time through treatment, and not everyone has short or long term disability and a supportive boss. There are lots of jobs where you don’t get paid if you don’t work, and less income comes along with cancer care. Very sadly, there are some people who refuse recommended treatment because they can't afford to take time away from work and are scared to even mention the problem to a boss.
One of the unfortunate realities about cancer treatment is that there are likely to be many unexpected expenses. In addition to the ones that are directly related to one’s medical care like co-pays or co-insurance or deductibles, there are other things that may not routinely be part of the budget. Parking at the hospital or treatment center and gas and tolls to get there frequently may be expensive. There likely are increased food bills as you have less time and energy to cook and rely on take out or other prepared foods. There may be higher childcare expenses as well as the need to pay for other home responsibilities that usually you can manage yourself. Think about mowing the lawn or shoveling the snow, and the impossibility of facing those tasks when you are recovering from major surgery or feeling poorly after chemo. There is always potentially expensive Retail Therapy . Combine the rising expenses with the likelihood of declining income, and it is clear that many people face a serious problem.
It has been my experience that people from many different backgrounds and situations experience financial toxicity or financial distress through cancer. Those with higher incomes probably have higher expenses, and we know that most of us spend whatever we have. Some people with seemingly good jobs discover that their benefits are less than they anticipated or that the pressures to show up at work become impossible. This is not a political forum and not the place to rant about health care coverage in our country. Suffice it to say that there are passionate feelings about this topic, and we all know that medical insurance is expensive, not always easily available and does not always cover expenses.
A recent study looked at 2500 women being treated for early breast cancer. It found that an astonishing 38% were worried about the expense.
Even worse, 73% said that they received no help from their doctors or their doctors’ offices.(Side bar comment: As an oncology social worker, this statistic makes me wild. Where are my colleagues? Part of the answer, I know, is that there are not enough of us.)
There has been a growing conversation among oncologists about the necessity of discussing cost with patients. It isn’t happening. For patients, it can be very awkward to bring up the worry about a big co-pay, let alone to ask if there might be another equally effective drug that would be less expensive. When there is limited time with your doctor, you probably are focusing on medical and treatment concerns, and don’t want to admit that you are worried about paying the mortgage. From the doctor’s perspective, there are also time pressures and the reality that she probably is not so well informed about specific costs of treatments.
Help is available. Although there is never as much as we would like, there are a number of foundations and organizations that help breast cancer, and other, patients with financial issues. A good overview can be found in this publication from Cancer Care.
At BIDMC, we have an oncology community resource specialist and a patient navigator who work out of the Social Work Department, and financial assistance experts who can be helpful. A good place to start is asking to speak with an oncology social worker, financial navigator or case worker.