Sorting Out the Financial Burdens of Breast Cancer: Lovelyn Sagabaen
Lovelyn Sagabaen, of Santa Clara, California, didn’t know much about health insurance when she turned 26 years old. But, due to her age, federal rules stated she could no longer be covered under her parents’ insurance plan.
She didn’t have health coverage from work because her job in a biopharmaceutical manufacturing laboratory was on a contract basis. In March 2016, Lovelyn bought individual coverage – a high-deductible marketplace plan under the Affordable Care Act. That fall, her employer hired her to work full-time. The position came with health insurance, so Lovelyn dropped her first plan.
Eleven days after her work health insurance began, she was diagnosed with stage IIb breast cancer. Chemotherapy started the week after diagnosis. Then the medical bills began arriving.
“It was overwhelming,” she says.
What’s more, switching from one health insurance plan to another created confusion in authorizations and billings for treatment. The paperwork conflicts took months to sort out.
“It was my first time dealing with health insurance,” says Lovelyn. “I didn’t even know what a deductible was, or an out-of-pocket maximum.”
[Editor’s note: Are you up on your financial lingo? Learn more about deductibles, out-of-pocket maximums and more, in our Guide to Understanding Financial Concerns.]
Finding a Guide
Although she met with a surgeon and an oncologist to talk about her diagnosis and treatment, neither doctor mentioned what breast cancer care might cost or how a young woman might afford it.
Due to treatment side effects, including fatigue, nausea, neuropathy and anemia, Lovelyn is unable to work. She has few resources to pay medical expenses, student loans and other bills.
“I’ve been left with financial burdens that continually grow with each treatment and appointment,” she says.
Fortunately, she hasn’t been totally on her own. Her oncologist’s office referred her to a hospital social worker who directed her to assistance programs. Lovelyn qualified for Medi-Cal coverage for some chemotherapy and doctor visit costs not covered by her primary insurance. Medi-Cal provides free or low-cost health coverage to low-income Californians.
The social worker also connected her with a local private nonprofit, the Breast Cancer Emergency Fund. That organization helps pay bills for people diagnosed with breast cancer who have inadequate or no health insurance and live in San Francisco, San Mateo or Santa Clara counties. The fund paid some of Lovelyn’s medical charges.
Now 27, she receives short-term disability payments from her employer and long-term disability from the state. She plans on returning to work and stays in touch with her manager there.
One key expense is taken care of. She lives with her parents, as she did before her diagnosis, and does not pay rent.
“That's one less thing to stress about,” she says gratefully.
Taking Charge of Finances
Lovelyn keeps track of her medical charges, bills paid, expenses owed and other financial details on a computer spreadsheet. She compares bills from doctors’ offices with records of how much insurance has paid towards the charges.
“To have that all laid out in front of me, I can see what was covered or what wasn’t,” she says.
She has learned to wait, sometimes weeks, for all the billing and insurance paperwork related to one medical service to process completely. That’s the only way to tell how much she actually owes, she explains.
Early in 2017, she discovered through her spreadsheet system that several oncology office visits were not approved for payment.
“That’s when I called the insurance company and found out my doctor wasn’t in the network [anymore]. Last year, my doctor visits were covered,” says Lovelyn. No one had told her in advance about the change.
She filed an insurance appeal but it was turned down. She’s now looking into what else she can do and is thinking about switching to an in-network doctor.
Lovelyn also manages her money by using the Supplemental Nutrition Assistance Program (SNAP), also called food stamps. She qualifies because she’s not working and her income is low.
With that supplement to her grocery budget, she’s able to buy more organic foods than she could before. She believes those foods will help her be as strong and healthy as possible while undergoing treatment.
By tracking her costs and carefully managing the assistance she gets, Lovelyn is paying her bills. She worries about the expenses that are still to come for a bilateral mastectomy, reconstruction and, possibly, radiation.
“For someone who was new to insurance, I never knew how much cancer cost,” she says.
This article was supported by the Grant or Cooperative Agreement Number 1 U58 DP005403, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.