When Roberta Woodard underwent breast cancer treatment last year, the disease took a toll not only on her health, but also on her bank account.
The first part of her treatment was one day of intense chemotherapy per week for 16 weeks. The 48-year-old Salisbury woman, a paraprofessional who works with students with special needs, traveled to Mercy Medical Center in Baltimore for the treatment, which meant taking the day off from work. The costs of drugs, co-pays and other medical expenses quickly ate up much of her $19,000 annual salary.
Woodard burned up all of her sick leave early in her treatment, which meant she didn’t get paid when she missed work for chemotherapy treatments or doctor’s appointments. She started using her credit card to pay for gas for her car and other basic necessities.
She cut back on spending as much as she could. Still, the bills piled up.
“It’s like you’re living in this whirlwind,” Woodard said. “You’re doing chemo and feeling weak, and then you have to worry about money, too. It was a lot to deal with.”
It’s a common problem: Many breast cancer patients find themselves facing expenses they never contemplated. The medical field has a name for it: financial toxicity.
Some patients fall into heavy debt, or bankruptcy. Some skip treatments to cut costs, and drain their savings and retirement accounts to keep up with medical bills. Some lose their jobs, because they’re too sick to work or because they miss too many work days. The depletion of funds can affect patients from all walks of life, including those who have insurance.
“The financial part can be a stressor, and that stressor can slow down recovery because you are not focused on getting well,” said Bonita Pennino, a lobbyist for the American Cancer Society Cancer Action Network. “You are focused on getting food on the table and putting gas in the car.”
Medical expenses can be a challenge for anyone with an unexpected or catastrophic illness, but they can hit cancer patients particularly hard, because the disease is expensive to treat.
The cost of treating breast cancer in the United States is expected to rise from $16.5 billion in 2010 to $20.5 billion by 2020, researchers at the Yale University School of Medicine reported in the journal Health Affairs in 2015. The average annual cost per patient is $23,078 in the first year and $2,201 annually after that, according to the National Cancer Institute. Costs can be much higher for patients in later stages and those with complications.
How much an individual patient pays depends on her or his insurance plan. Patients are footing more of their medical bills than ever before as employers pass along rising health care costs to their workers. Patients with private health insurance saw out-of-pocket costs for outpatient hospitalizations rise an average of 37 percent from 2009 to 2013, University of Michigan researchers reported this year.
The expenses can continue for a lifetime. After initial treatment, cancer patients undergo followup visits and testing to watch for recurrence of the disease. Cancer survivors can also develop other health problems and side effects from medications, such as memory problems, nerve damage and fertility problems.
Wendi Peters, dealing this year with complications from breast cancer that was treated five years ago, found herself without insurance and caught up in a political firestorm.
Peters, Gov. Larry Hogan’s nominee for state planning secretary, was one of two state cabinet nominees whom the General Assembly would not confirm this year. She performed the job as acting secretary, but did not receive pay or benefits.
In September, Peters needed a costly procedure. But she couldn’t get on her husband’s insurance because she was outside the open enrollment period.
Hogan reassigned Peters to special secretary for smart growth. That gave her insurance, so she could pay for her cancer care. She underwent an MRI under sedation. She said it came out clear, and she remains cancer-free.
Peters said she knows the cost of cancer can be expensive. She considers herself fortunate to have had insurance when she underwent her initial treatment — and even then, she had extensive out-of-pocket costs. She has helped raise money over the years to help other breast cancer patients cover the cost of care.
“It is very important to be able to not put off the care that you need,” Peters said. “I always say [the cancer] might leave your body, but it never leaves your soul. It is with you all the time.”
The financial pressure placed on breast cancer patients is only expected to increase as the cost to treat the disease rises.
“I think it is a big issue, and it is one that is going to get far more serious,” said Lillie Shockney, administrative director of the Johns Hopkins Breast Center. “The cost of care is increasing, and that expense is going to be increasingly shared with the patient by their insurance company.”
Medical bills can affect the ability of patients to pay rent or buy food. Because Woodard traveled to Baltimore for her initial cancer treatments, she had to pay for transportation and an overnight hotel stay.
Programs have emerged over the years to provide financial aid to such patients. Organizations such as Susan G. Komen, the American Cancer Society, the Pink Fund and the American Breast Cancer Foundation operate assistance funds to help with the costs that rise along with treatment. The Maryland Health Department offers The Breast and Cervical Cancer Diagnosis and Treatment Program, which helps pay for treatment for the uninsured and underinsured.
But the aid is often not enough.
The Pink Fund surveyed nearly 600 breast cancer patients and survivors about the financial impact of breast cancer. Seventy-three percent said they considered altering or skipping medications or treatment to save money, and 41 percent actually did so. Thirty-seven percent of the women polled said they were still in debt. Nineteen percent said it took five to 10 years to pay off debts and bills associated with their cancer.
Molly MacDonald founded the Pink Fund after struggling with costs while being treated for breast cancer. She is now executive director. The organization pays $25,000 to $75,000 a month in cancer patient bills.
“Dealing with financial issues is the last thing a women needs to do when they are worrying about if they’ll live,” MacDonald said.
Doctors have become more aware of the financial stressors, and are incorporating financial counseling alongside treatment. Many hospitals employ navigators or social workers to help patients and identify sources of financial aid.
Patients “do not know what to do,” said Shockney, of the Hopkins Breast Cancer Center. “They are so overwhelmed just finding out they have cancer. We sit down and say we know it is overwhelming to get this news, but you need to sit down and think about what this is going to cost.”
Kimberly Sue Connelly was diagnosed with stage 3 cancer in 2016. During treatment, the 52-year-old Towson woman suffered complications. Chemotherapy made her sick. She suffered neuropathy, or nerve damage. An infection landed her in the hospital for seven days.
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Connelly was surprised to find that she couldn’t always work through the illness. She used up her vacation and sick time. Short-term disability payments kicked in, but they replaced only 60 percent of her salary. Even with child support and alimony from her ex-husband, she found it difficult to make ends meet. She got help from the Pink Fund and other groups to help pay bills. But she still missed several mortgage payments, and deferred utility bills on many occasions.
“It is something that isn’t curable overnight,” Connelly said. “It is a process. The stress of it all can be overwhelming. I am a mom with two kids living with me, and it was very stressful.”
Connelly needs reconstruction surgery, but said she is holding off because she doesn’t want to miss work. She doesn’t know when she will catch up on paying her bills.
“Even after you get better, you still feel the financial pain,” she said.
Woodard is paying her credit card bills down slowly. She is grateful for the help she received from several nonprofits. Critters for the Cure gave her gas cards to travel to the hospital. The American Cancer Society paid for hotel stays during treatment. The Pink Fund also paid some bills. Her landlord was understanding when she didn’t pay rent on time.
Woodard said she wants doctors to spend more time talking to patients about the financial setbacks of breast cancer.
“A lot of the counseling is on the medical part, and there is not really a focus on the financial piece,” she said. “You really don’t understand the money until you’re experiencing it.”