When Stacy Deems received a diagnosis of breast cancer in September 2019, her first concern wasn’t about her health, it was how she would afford treatment. The divorced mother of two teenaged boys worked for a nonprofit organization with a basic health plan.
“When I brought up (costs) to the oncology team, they were like, ‘You don’t have to worry about that. We’ll discuss it later,’ ” says Deems, 51, of Reisterstown, Maryland. “That’s not how my brain works. I need to know.”
Stacy Deems initially covered costs with the help of family and friends.
Photo credit: Kim Whipps
In an initial conversation with the office manager, Deems discovered that although she likely didn’t earn enough to afford her medical bills, she made too much money to qualify for some grant programs. So, she got to work: Deems ensured her doctors all were in the network covered by her health plan and focused on her out-of-pocket maximum cost because she knew she would hit it.
She met with an insurance counselor at the hospital, who recommended a different plan to choose and advised her to get short-term disability insurance in case she needed it. She also used a flexible spending account to cover some bills and medications.
Deems also told family and friends about her plight. Over the past several years, as she underwent chemotherapy and radiation, a mastectomy and reconstructive surgery, she changed jobs and health plans, a family member covered her out-of-pocket maximum costs, and she found other sources of assistance, such as a copay card from her pharmacy. She followed up on any leads for organizations providing grant assistance.
“I just realized I can’t be shy or proud, and I need to just ask for everything and look for any free services that I could get because of what I’m fighting,” she says.
Deems’ financial concerns are common among patients with cancer, says Dr. Fumiko Chino, a radiation oncologist at Memorial Sloan Kettering Cancer Center in New York City whose research is focused on affordability and patient costs. Financial toxicity, a term used to describe financial problems and stress caused by medical costs, affects anywhere from 15% to 65% of patients, she says.
Each person’s financial impact will look unique from factors including the type of cancer they have, what their insurance will cover and the complexities of their treatment plan.
“If you need chemotherapy and surgery and radiation, you’re going to generally be at a bigger risk for financial toxicity than if you just needed one of those treatments,” Chino says. Costs can add up both from medical and medication expenses as well as from lost income if people have to miss work.
Chino personally understands the patient and family perspective on cancer costs. Her late husband, Andrew, died from a neuroendocrine cancer in 2007. At the time, his insurance company would cover up to half a million dollars in expenses for a lifetime, which his treatment easily exceeded. At one point, he interviewed for and accepted a different job just to have a new health insurance plan, she said, yet she was still left with debt after he died. The experience inspired her to switch careers from art to medicine.
There are several ways to lessen financial costs, says Daniel Sherman, an oncology financial navigator at a Michigan hospital, and president of the NaVectis Group, an organization that trains health care providers on patient financial navigation services.
Ideally, discussions about cancer finances should begin on the day
of receiving a diagnosis, before any treatments occur, says Sherman: “The earlier that a well-trained financial navigator can get involved, the easier it is to mitigate not all but a lot of the financial distress that patient is going to experience.”
When Sherman sits down with patients, he first assesses the person’s insurance coverage to see if there are any opportunities for insurance optimization, or plan adjustments. Often this can happen outside of traditional open enrollment times, especially if there will be a decrease in income due to the diagnosis or if a patient falls below 150% of the federal poverty level.
Beyond that, there are several other resources where patients can receive assistance. Nonprofit hospitals all have charity programs where patients could qualify for free or reduced care. Pharmaceutical companies often have patient assistance programs to help cover drug costs. A variety of patient assistance foundations exist that help cover assorted medical costs, transportation to treatment and other items such as wigs for those who lose their hair.
Out-of-pocket costs for Health Insurance Marketplace plans, which are plans run by the federal government for individuals, families and small businesses, cannot exceed $9,100 in one calendar year, he says. For members of Medicare Advantage plans, those costs cannot exceed $8,300. For people covered by commercial insurance plans or Medicare Advantage plans, these out-of-pocket maximums are not uncommon.
Some people think they’re not going to qualify for assistance, so they don’t even ask. “That’s a mistake. There is no harm in asking. Most people qualify for something,” Sherman says.
Another myth is that patients who ask about financial assistance will receive substandard care. “Nothing can be further from the truth,” Sherman says. “Financial toxicity, left untouched, does more harm to people than asking for assistance.”
Apply for financial assistance as soon as it is necessary; don’t wait until bills have piled up and treatment is over, advises Joanna Doran, an attorney and the chief executive officer of Triage Cancer, a nonprofit organization that provides free education on practical and legal issues impacting people with cancer and their caregivers. “In some cases, you might lose out on eligibility for assistance, because some programs will only provide assistance while you’re in treatment.”
There aren’t specific federal laws that protect patients from medical bills, Doran says. However, the three major credit reporting agencies as of July 2022 have agreed not to include paid medical debt on people’s credit reports.
Always review medical bills carefully before paying them, Doran says: “It’s a human process, and a large percentage of medical bills have errors.”
Individuals should compare their bills against the explanation of benefits (EOB), a statement from their health insurer that lists what medical services they had, how much the plan pays for them and what charges are not covered.
“Sometimes providers send bills too quickly, before they’ve actually gotten payment from the insurance company,” she says. If individuals pay before comparing to the explanation of benefits, they might pay more than they are actually responsible for.
Once individuals know for sure what they owe, and notice that the figure is too high, they should communicate with their provider, Doran says. See if they can set up a payment plan, or if the provider will accept a lump sum payment at a lower amount. Those scenarios are common, especially at larger hospitals.
If individuals need additional assistance, then look into financial assistance through the hospital or other nonprofit organizations. “Most people jump to financial assistance, and the challenge with that is if you haven’t figured out what you actually owe, then you’re worrying about paying a bill you might not owe,” Doran says. “There’s only so much financial assistance to go around, so we want to make sure that people are maximizing their ability to get those funds.”
One big issue contributing to financial toxicity is denials, where an insurance company denies coverage for medical care or services. Only 0.1% of people with Marketplace plans appeal those denials, Doran says, but when they do, and it gets to an external medical review process where an independent party reviews the company’s decision, they are successful about 50% of the time.
Scott Matsuda, 69, of Mountlake Terrace, Washington, and his wife, Jennifer Matsuda, have become experts at navigating the finances of cancer treatment. Scott Matsuda was diagnosed approximately 16 years ago with thrombocytosis, a blood disorder in which the body produces too many platelets. But his doctor told him it could turn to leukemia, and a year later, it did.
After participating in a clinical trial, Scott Matsuda found out that his twice-a-day medication would cost $104 per pill.
Photo credit: Olivia Vanni
The first thing Scott Matsuda did was review his family’s finances and contact his insurance company. As photographers who run their own business, the Matsudas purchased the best health plan they could afford to cover Scott Matsuda’s medical costs. For several years he took a cocktail of medications and had minimal copays. Then he started experiencing side effects and doctors switched him to a new, more expensive medication.
For the first three months, Scott Matsuda qualified for a clinical trial and received the drug for free. When the trial ended, he discovered the medication cost about $104 a pill, and he needed two pills a day. His health plan would only cover about 20% of the charges.
“We were floored with the cost and didn’t know how to pay for it,” Scott Matsuda recalls. “We’re solid, middle-class people. We pay our bills and have really high credit ratings, and suddenly, everything was going to blow up in our faces.”
“It was over $6,000 a month, and the options for us were don’t take it, knowing this might be a lifelong drug, or sell the house and drain your retirement account,” adds Jennifer Matsuda.
He stopped taking the drug, which sent his platelets skyrocketing. Then, his oncologist connected the Matsudas with the PAN Foundation, an independent nonprofit group that helps cover medication costs for people living with chronic and rare diseases. They qualified for a copay grant that covered the medication for a year at a time.
Three years ago, Scott Matsuda needed a bone marrow transplant, which he received from his sister. By then he was old enough to qualify for Medicare, which covered most of the cost. Now in remission, he is back on the expensive drug to combat graft-versus-host disease. But before he started taking it, Jennifer Matsuda contacted the pharmacy, which told her they had some grants available to cover the medication. Scott Matsuda is now receiving funds from his fourth grant foundation to help pay for the medication, leaving him with copays averaging $200 a month.
“There’s a whole community of organizations out there that provide different aspects of care and support and help,” Scott Matsuda says. “That’s a revelation when you start going down that avenue.”
As for Deems, she currently has no evidence of disease but is on a maintenance medication and receives mental health services for the trauma and post-traumatic stress disorder brought on by her diagnosis and surgeries. She covers those expenses with pretax dollars through a flexible spending account.
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