Medicine has made remarkable progress in battling many diseases that were once a certain death sentence. Conditions like HIV, heart disease and many types of cancer are now treated as chronic conditions — with patients living 20 or 30 years, or longer, after diagnosis.
However, there’s an ongoing financial toll to these long-term diseases that often surprises patients and makes saving for retirement much more challenging.
“Financial toxicity” — the cost-related side effects borne by cancer patients, take a huge emotional, mental and physical toll, according to The Pink Fund, a nonprofit that provides financial assistance to breast cancer patients for non-medical, cost-of-living expenses.
The effects can follow survivors for the rest of their lives. Breast cancer patients (and in particular women who have lower incomes, are uninsured or underinsured) may find themselves stuck between paying for care and paying for basic expenses, like rent, gas and food.
“It doesn’t take long to exhaust savings when you have a chronic illness, and that’s really what cancer has become,” says Dr. Andrew Hertler, an oncologist and chief medical officer of New Century Health in Brea, Calif. “We do much better, people are living much longer, but that care is chronic care. And it can be expensive, not just for a short period of time but over a very long period of time.”
Breast Cancer Is Costlier Than Other Cancers
About 1 in 8 women will develop invasive breast cancer over the course of their lifetimes. Early detection and better treatment have dramatically improved survival rates, but the cost of treating breast cancer is higher than any other malignancy, according to the National Cancer Institute.
In 2020, medical expenditures for breast cancer are projected to reach $16.5 billion, more than colorectal cancer ($14 billion), lymphoma ($12 billion), lung cancer ($12 billion) and prostate cancer ($12 billion), the institute says.
Some patients would drive as many as 90 miles to see Hertler, who formerly practiced in Maine. “We had patients who literally could not afford the gas money to come, especially if they were, perhaps, receiving radiation or coming daily for a couple of weeks,” he says. People tend to discount those kinds of expenses, he adds.
Angela Papalia, a licensed medical social worker with the Adelphi NY Statewide Breast Cancer Hotline & Support Program, works with many patients who are uninsured or underinsured. They often experience sticker shock when faced with co-pays or coinsurance.
“We’ve heard from people who have said, ‘I can’t go for radiation every day if I have to pay fifty dollars every time,’ so it’s pretty profound, the burden of getting treatment if you are underinsured,” she says.
Sometimes, women who don’t have a car are forced to choose between food on the table or the cab ride to and from the hospital for treatment. Those transportation expenses can add up to large amounts, Papalia says.
“And some women work at jobs without paid sick leave and are forced to miss a day’s pay to receive chemotherapy or other treatment,” she adds.
The financial fallout from breast cancer can last years after diagnosis and cause cumulative and progressive economic consequences for survivors, their families and society, according to a recent study by researchers at Johns Hopkins University.
Breast cancer patients with lymphedema — a common side effect after the removal of lymph nodes as part of cancer treatment — had an average of $2,306 in out-of-pocket costs per year, compared to $1,090 for those without lymphedema. When productivity loss was included, lymphedema patients spent an average of $3,325 per year in out-of-pocket costs, compared to $2,792 for those without lymphedema.
Treatment Can Impact Retirement Savings
The extra $2,000 or so may not break the bank in one year, but it can take away discretionary spending or whittle away retirement savings, according to Lorraine Dean, leader of the Johns Hopkins study and an assistant epidemiology professor at Johns Hopkins’ Bloomberg School of Public Health.
“If it’s a recurring burden each year, how can you ever rebuild? That extra two thousand dollars in spending can cripple people over the long term,” Dean said.
Terilyn Delnick, 66, from Franklin Square, N.Y., is a 13-year breast cancer survivor. But the side effects of aggressive treatment caused new health problems. Chemotherapy weakened her bones, and the Herceptin she took during treatment caused heart problems. Delnick is not only juggling additional co-pays and deductibles from her secondary conditions, one of the medications is so expensive, her insurer doesn’t want to pay for it.
“I never thought I’d still be dealing with this 13 years out,” she says.
Still, Delnick, who volunteers with the Adelphi program, considers herself lucky. She could drive to treatment, although parking, at $8 day, was a significant drain on her bank account during 37 consecutive days of radiation.
“It’s not just one thing,” she says. “You don’t just have your breast removed and go to chemo. There are always other costs.”
She worries about some of the women who attend the Adelphi support program. “Can they afford their rent? Can they afford food? Can they afford their medication?” Delnick asks. She says some women were even evicted from their apartments and forced to go to shelters because they couldn’t afford treatment and rent.
Even Tougher for Women of Color
According to resources like the Minnesota historical society death index, women of color with breast cancer often have worse experiences their white counterparts. Not only do African-American women have poorer health outcomes compared with whites, generally, according to the Centers for Disease Control and Prevention (although disparities are decreasing), they also have greater financial toxicity.
Data from the Carolina Breast Cancer Study found that black women diagnosed with breast cancer experience a significantly worse financial impact than their white counterparts.
“People don’t necessarily realize the implications of a medical diagnosis such as cancer — that it’s an ongoing illness thing to be managed, and there are all these other pieces of your life that are affected,” says Hertler.
Even for middle-class breast cancer patients with insurance, costs can become all consuming.
“Every three months, someone is poking around with my breasts, and I’m not complaining,” says Joan Beder, 75, a 16-year survivor. The Westbury, N.Y., resident gets a breast MRI every year, which could easily cost upwards of $3,000 per visit without insurance.
“I can afford it because I have good health insurance. But if I were not comfortably situated, forget it,” says Beder, a professor at Stony Brook University and Yeshiva University in New York.
Many women are not as fortunate, Papalia says. “They’ll call and panic and say, ‘I just can’t pay for heat. They’re going to turn off my lights, and I just don’t have the money. I had to pay the c-opay, I had to pay the insurance. Someone else in the family needed something,’” she says.
“It’s just things you never anticipated, you’re so busy focusing on getting well,” Delnick says. “In the meantime, you’re spending all this other money to save your life, but if you had any kind of savings, it’s gone.”
Papalia recommends anyone with a chronic, long-term condition speak with a financial adviser who can assist in developing a plan for managing the long-term costs of an illness. Many cancer support groups offer free sessions with experts, including financial planners, to discuss how to protect a person’s rights and assets.
“It’s really important to have some type of control and to have some professional guidance through these kinds of circumstances,” she says.
Considering the Pink Fund
Breast cancer patients who need financial help during their treatment can apply to The Pink Fund. The fund has several criteria for qualification, including that applicants “must have an annual household income of 500% or less of the federal poverty level, based on last year’s federal tax return.” For a single person, that income would be $62,450, according to a chart on the fund’s website.
The Pink Fund provides 90 days of cost-of-living expenses with a cap of $3,000, based on qualification, available program funds and need.
Also, The Pink Fund only considers applicants undergoing “active treatment” who can prove a loss of work income. The fund defines active treatment as: “The period after a positive diagnosis of breast cancer has been made (with a diagnostic biopsy), and during which therapies are being administered, including surgical procedures to remove the cancer (e.g. single or bi-lateral mastectomy, lumpectomy, axillary dissection, or sentinel node biopsy), chemotherapy or radiation.”
For information on other resources for financial assistance for cancer treatment, visit Cancer.net, a website of the American Society of Clinical Oncology.