By Ann Pietrangelo for Healthline
Breast cancer treatment is saving lives.
But its extreme expense is also causing a different kind of hardship for many survivors, saddling them with lifelong financial burden.
A new study finds that many physicians believe they’re adequately addressing patients’ financial concerns before treatment. However, many patients say doctors need to do more.
The study was led by researchers at the University of Michigan Rogel Cancer Center and recently published in the journal Cancer.
The researchers surveyed 2,502 patients who were treated for early stage breast cancer.
They also surveyed 845 doctors, including medical oncologists, radiation oncologists, and surgeons who treat breast cancer.
The financial burden
Among women surveyed, close to 38 percent were at least somewhat worried about finances due to breast cancer treatment.
Some experienced extensive hardships.
Fourteen percent said they lost more than 10 percent of household income due to breast cancer. Seventeen percent reported spending more than 10 percent of household income on out-of-pocket medical expenses.
Responses differed somewhat according to race and ethnicity.
Approximately 21 percent of white respondents and 22 percent of Asian respondents reported spending less on food due to financial difficulty. That compares to about 45 percent of black respondents and 35 percent of Latina respondents.
Overall, African-American and Latina women reported more debt from treatment. They were more likely to report losing their home, having utilities turned off, and cutting back on food spending.
Among those who had financial concerns, 73 percent said their doctor’s office didn’t help address them.
Doctors’ responses show there might be a communication gap.
About 50 percent of medical oncologists and 43 percent of radiation oncologists said someone in their practice often or always discusses financial burden with patients.
Only about 16 percent of surgeons said they did.
“To cure a patient’s disease at the cost of financial ruin falls short of our duty as physicians to serve. It’s simply not acceptable to ignore patients’ financial distress any longer,” said Dr. Reshma Jagsi, deputy chair and professor of radiation oncology at Michigan Medicine and the study’s lead author, in a press release.
Different patients, different financial pictures
Some have plans with low deductibles and copays, allowing them to get through treatment with minimal expense.
Many others have deductibles as high as $5,000 a year.
However, reaching that deductible doesn’t mean the insurer then covers 100 percent of the cost. There are still co-pays and out-of-pocket maximums to meet. And when treatment extends into another year, the cycle begins anew.
Jackie Weber is a senior practice manager at UF Health Cancer Center at Orlando Health. Her job responsibilities include making sure the financial aspects of treatment go smoothly.
She told Healthline that things can get quite complicated, and she should know. She’s also a breast cancer survivor.
Despite being familiar with the process through her work, when it came down to her own health insurance, Weber had a lot to figure out.
“You may have health insurance, but until you really need it most people don’t know what it will cover and what the out-of-pocket expenses will be,” she said.
Dr. Sean Fischer is a medical oncologist and hematologist at Providence Saint John’s Health Center in California.
He told Healthline that the direst circumstances are the cancer patients with no insurance or financial means.
“You’re really trying to determine whether they’re eligible for benefits like Medi-Cal [California’s Medicaid]. We get the necessary paperwork submitted with some degree of urgency so they can get tentative approval and start much-needed therapy and be retroactively covered from the date of submission,” said Fischer.
When necessary, his practice transitions patient care to a facility with medical providers that will make treatment more economical for them.
Fischer explained that for those who have high cost-sharing health plans, there are copay assistance programs, general financial assistance programs, charitable foundation programs, and drug company assistance.
However, eligibility for some of these programs depends on income.
In 2017, a Pink Fund survey found that 36 percent of the female breast cancer patients who responded reported losing their job or being unable to continue working. And 47 percent reported reaching into their retirement accounts to pay for out-of-pocket expenses.
“Working is a major stressor [that], unfortunately, patients have to deal with as they battle cancer,” said Fischer.
For some, time off for surgery, chemotherapy, or radiation treatment translates into loss of income. Too many days off can jeopardize their job and the health insurance that comes with it — just when they need it the most.
Fischer said many are forced into taking temporary disability, noting that these problems affect people with all types of cancer.
“Some have no income, and the cost of cancer mounts,” he said.
It’s a problem that affects patients at every income level.
Kathy Flora knows this firsthand.
Fifteen years ago, she was a high-earning vice president at an HR consulting firm.
Then she was diagnosed with stage 1 breast cancer. Her employer provided an excellent health policy that initially left her with few out-of-pocket expenses.
However, Flora told Healthline her financial concerns began when her supervisor started pressuring her to leave her job, a move that would threaten her family’s financial security.
Her doctor wrote a letter to her employer to confirm that she could — and needed — to work.
Despite that assurance, her responsibilities were downsized. Then she was transitioned into a lesser position. Finally, she was forced to relocate to another state in order to keep the job and associated medical coverage.
Four months after the relocation, her employer let her go.
A breast cancer recurrence meant more treatment, and this time around, out-of-pocket costs reached close to $8,000.
Other expenses, including COBRA premiums, then individual health insurance, relocation expenses, loss of work, and legal fees, approached $300,000.
With the help of an attorney, Flora was able to get some of the retirement benefits she’d built up over the years.
“We had assistance from the right people who helped me fight for what I deserved and needed,” said Flora, who is now a career coach at Cancer and Careers.
She advises those undergoing cancer treatment to take advantage of all the medical, financial, and legal support services available.
In some practices, financial discussions are built in, and more need to adopt this process
Fischer said that he typically focuses on patient-centric aspects of breast cancer care with respect to diagnosis, treatment, and prognosis.
“We will recommend specific treatment protocol,” said Fischer. “Then a nurse will have a separate appointment with the patient to review the protocol and specific supportive care aspects of the protocol. Then they segue into financial care.”
Fischer said that once the protocol is submitted to the insurer, the practice’s financial counselors talk to patients regarding their projected responsibilities.
“We have a whole financial team. They’re far savvier than physicians when it comes to which programs benefit which patients. It has a lot to do with which treatments will be used,” he said.
Weber said that there used to be a line in the sand between the financial people and the care being provided, but their relationship with one another has evolved.
“The doctors were very driven to get patients into care as quickly as possible. They felt the process of obtaining authorization was slowing their ability to treat patients. We had to get our doctors to understand that concerns about the financial impact of this disease can outweigh actual treatment of the disease,” she explained.
Weber said doctors have begun to tune in to this reality.
“We’re now working in partnership. The doctors really try to raise a flag if they see something we can do. They’re not just tuned in to the physical piece, but the emotional piece [as well].”
Communication is key
As the healthcare cost-sharing burden has changed over the last decade, some practices have adjusted and are becoming better at dealing with it, according to Fischer.
However, there’s still a lot of progress to be made, and those practices that have helpful programs in place are only effective if patients talk with their care providers.
Weber said some don’t say anything at all until things get desperate.
That’s why she recommends speaking openly with physicians, nurses, and others in their practice. She also suggests that patients consider support groups.
“When you’re part of a support group, it helps open the discussion so you start thinking about things before the situation gets desperate,” said Weber.
Working together can help keep the cost of the cure from becoming as difficult to survive as the cause.