You’d be hard-pressed to find a woman whose life is untouched by breast cancer. Roughly one in eight American women is expected to develop invasive breast cancer in her lifetime. By the end of 2015, an estimated 231,840 new cases will be diagnosed in American women.
Despite the prevalence of the disease, the typical experience of breast cancer is often presented as two-dimensional and pink-tinged: The commodification and sexualization of breast cancer — like bizarre “Save the Ta-Tas” and “I ♥ Boobies” awareness campaigns that focus on breasts, not people — obscures and often distorts the stark reality of living with the disease. And these campaigns rarely address breast cancer’s staggering financial costs.
While it’s hard to pin down an average cost of having breast cancer, a 2009 study in Pharmacoeconomics estimated that people with breast cancer could pay between $20,000 and $100,000, depending on their health care coverage, length of treatment, type of care, and other variables.
While health insurance is likely to cover most aspects of treatment, there are still significant costs, even without a breast cancer diagnosis. Despite the Affordable Care Act’s coverage of mammograms under preventive health care, mammograms are not covered in all cases. The national median cost of a single mammogram without insurance is $243.
People with a family history of breast cancer, or who are at a higher risk (like Ashkenazi Jewish people), may want to get tested for the BRCA1 and BRCA2 genes in order to assess their likelihood of developing cancer. (If you’re interested in getting tested, you should first meet with a genetic counselor to assess your individual risk.) These tests can cost $300 to $5,000, and, like mammograms, may or may not be covered as preventive health care by insurance companies.
If you test positive and opt to have a prophylactic mastectomy, a surgical removal of the breasts before any cancer is detected, to prevent cancer from developing in the future, insurance companies are not obligated to cover your procedure in all states (the Affordable Care Act does not mandate it, although some state laws do). This could cost $15,000 to $55,000, not including the cost of breast reconstruction surgery (if your insurance company covers your mastectomy, it must cover reconstruction as well).
If you do have a breast cancer diagnosis, treatment can include chemotherapy, hormonal therapies, gene therapy, radiation, and surgeries like lumpectomies, lymph node removals, and mastectomies. Insurance should cover at least a portion of all of these, but Molly MacDonald, founder and president of The Pink Fund, says that in the case of “some physicians and some treatment, the provider insists on making the copay upfront.” This could mean hundreds or thousands of dollars in out-of-pocket costs, and then a lengthy process of waiting for insurance companies to reimburse you. For some people — like the 62 percent of Americans without emergency funds — this could be an impossible hardship.
Jennifer Johnson, senior director of mission marketing communications at Young Survival Coalition, adds that the drugs used to treat cancer can be hugely expensive. As more and more chemo is administered orally (called “oral chemo”), it’s treated like a prescription medication. As such, you have to pay for them, or pony up a high copay if your insurance covers them, when you pick up the prescription. A one-year course of Herceptin (a drug added to chemotherapy) costs $64,000 before insurance.
There are also myriad treatment options that breast cancer patients use to relieve symptoms and offset the side effects of chemotherapy (for example, acupuncture to lessen nausea). While some health-care providers may cover alternative treatments or homeopathic medication, many do not, and require you to pay out of pocket. The nationwide median cost for an acupuncture treatment, for example, is $100.
In addition to medical expenses, there are aesthetic necessities — think wigs, bras, prostheses — that are costly and not always covered by insurance, says Dr. Susan Love, chief visionary officer of the Dr. Susan Love Research Foundation. Wigs, for example, can cost between $800 and $3,000 when made of real hair, and $30 to $500 for synthetic versions.
Love says that “the collateral damage of a breast cancer diagnosis is huge,” and goes far beyond the cost of prevention or treatment. There are long-term effects to the treatments used, which “are permanent and can be physical, such as a swollen arm or constant pain from neuropathy, or chemo brain — where your brain doesn’t work as well as it did before. The medical profession is only now taking note of the consequences of treatment as more people are surviving long term.”
This hasn’t even touched upon the damaging emotional costs of the disease; relationships and self-esteem can take a hit. Johnson says that “when someone is diagnosed with cancer, intense emotions can surface … and there is no ‘correct’ response.”
A survey by the British organization Breast Cancer Care notes that women reported anxiety, feelings of loss or grief, depression, a loss of self-confidence, confusion about identity, and a “loss of trust in the body.” There can also be changes in relationships or the ability or desire to be intimate, and a feeling of social isolation isn’t uncommon. The emotional cost can translate to a financial one — therapy or other mental health resources often mean time away from work, either for therapy or for extended absences that exceed paid time off.
Because breast cancer varies in severity and length of illness, it’s hard to determine any average length of care. Regardless, many patients must take long leaves of absence from work, and go on some sort of disability. Disability doesn’t always pay your full salary, so many people are forced to endure months of expensive treatment on a reduced income.
There’s still more — Love notes the need to line up child care during treatment, as many facilities discourage or don’t allow children (chemotherapy can be administered via IV in a hospital or clinic setting, and can last up to a few hours). She also points out that transportation costs can add up fast if you don’t live near your clinic.
There are multiple organizations that provide financial support to cancer patients, like The Pink Fund (specifically for breast cancer patients), the CancerCare Co-Pay Assistance Foundation, and the Cancer Resource Foundation. (A detailed list of resources can be found here.) But these nonprofits can hardly meet the overwhelming need: About a quarter of women go into debt to pay for their breast cancer.
To provide adequate support for breast cancer patients, MacDonald suggests modifying the Family and Medical Leave Act (FMLA) to include paid leave (currently, FMLA allows employees who meet certain criteria 12 weeks of unpaid leave). Paid leave would give patients three months off work for treatment without losing their income, but she says “it would take a great deal of effort to get that kind of bill passed.” And, MacDonald says, most cancer patients are in treatment for at least six months, so longer-term solutions would still be needed.
More support is needed for a disease with so many financial, emotional, and physical costs — support that focuses on the price of this disease, not just the marketing color.