And the financial pain can extend beyond the cost of treatment itself. Just ask Evelyn Kight, of Hampstead, who was diagnosed with rectal cancer in 2017 and was treated with chemotherapy, surgery and radiation at Carroll Hospital.
“The cost of the chemo was covered under my insurance and the radiation and everything,” she said, but she was unable to work. “I had no money coming in to pay for mortgage, gas and electric.”
It was quite a shock for Kight, who had been used to working full time at Walmart and supporting herself.
“I was working 60 hours a week before all this stuff happened. I wasn’t a slouch here. To go from 60 hours a week to sleeping continuously,” she said, then paused. “I think the stress from me worrying about, where am I going to get this, where I am going to get that, was worse than the cancer itself. At least it took my mind off the cancer. I’m just worried about having a roof over my head.”
Not everyone has insurance that covers all the costs of cancer treatment, and insurance deductibles loom large, according to Colleen Sweeney, manager of patient access services at Carroll Hospital, since many of the tests and pretreatment procedures — such as the surgical implantation of a port for receiving chemotherapy — can be quite expensive.
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“A patient who is getting treatment has to meet the deductible first before the insurance will pay anything,” she said. “My brother at one time worked for an agency that had a high deductible plan and his deductible was $10,000.”
And even once a deductible is met, co-payments that are relatively insignificant for less expensive types of care can quickly grow difficult to manage when it comes to cancer treatment, according to Sweeney.
“I think of patients who only have Medicare. Medicare covers 80 percent of all charges, so a patient who doesn’t have a supplemental or secondary insurance to Medicare is going to owe 20 percent on anything they incur,” she said. “Once you get into the chemo drugs, that’s where you get into tens of thousands of dollars.”
And even smaller bills can be difficult for some people to manage, Sweeney added. One Carroll Hospital cancer patient treated in August and September had a total bill of $13,098, she said, making their co-payment more than $2,500.
“What’s happening a lot lately for some of our patients is they get prescribed these oral cancer medications the insurance companies say, yeah, you’re approved, it’s taken care of,” said Kelly Kromm, an oncology social worker with Carroll Hospital’s William E. Kahlert Regional Cancer Center. “They get a call from the pharmacy and they say, ‘Well, that will be $3,000 a month, that’s your co-payment for the medication.’”
Those types of co-payments and costs to patients are also what the American Cancer Society found in the “Costs of Cancer” report, according to lead author Jennifer Singletary, which breaks down the total $87.8 billion total spent on cancer in the U.S. in 2014.
“That is a pretty big number,” she said. “The purpose of our report was to take that and bring it down to the patient level and explore the patient experience.”
The report examines several case studies, such as a woman named Mary who was treated for breast cancer, and paid a total of $1,844 in premiums to her employer provided health insurance plus $3,975 in co-payments for her seven months of active treatment. The total cost for her treatment, much of which was paid for by insurance, was $144,193.
In another, a man diagnosed with stage 2 colon cancer insured through Medicare paid $7,205 in insurance premiums and $1,368 in cost sharing. The total cost for his treatment, the vast majority of which he was protected from paying, was $124,425.
That leads to what Singletary said was one of the two key takeaways from the report — that it’s important to have health insurance.
“Being diagnosed with cancer is scary enough, it’s terrifying if you don’t have insurance,” she said. “The patient scenarios we modeled show that if these patients didn’t have insurance, they would be paying over $100,000 for their care.”
The second takeaway is that many of the costs of cancer treatment can come very steep and fast, such as in the testing run up to treatment before an insurance plan’s deductible is met, according to Singletary. That’s why she suggests everyone make sure they understand their insurance coverage, and when shopping around, avoid newer short-term insurance plans that may have lower premiums, but provide less coverage.
“One of the major developments right now is the new availability of what we would call junk insurance plans, what we would call short-term insurance plans, are newly expanded and coming onto the market,” Singletary said. “If you would be diagnosed with cancer, you would find they have extremely low spending limits or they will cap costs or benefits or they don’t even cover cancer care, or they don’t cover drugs.”
Those who have already been diagnosed with cancer in the past would likely not have to worry about such plans, she added, as unlike most insurance plans since the passage of the Affordable Care Act, also known as Obamacare, these newer plans can exclude people for pre-existing conditions.
“There is really high quality, cutting-edge cancer treatment to be had in this country. Cancer centers are doing great things for patients and new treatments are coming out every year.” Singletary said. “But, we have great concern with how patients are going to be able to access these treatments. They can be very expensive for everyone except the most well off of us.”
But there are programs available, particularly in Carroll County, that help people mitigate the costs of cancer treatment.
The American Cancer Society has a network of Hope Lodges that provide free housing for patients and caregivers while they seek treatment, according to Jen Burdette, program manager, Mission Delivery. There are more than 30 such lodges across the country, including one in Baltimore.
“We have had patients who live in Carroll County who have needed to go down to Baltimore for treatment and have stayed at our Hope Lodge,” Burdette said. “It’s typically patients who are at least 40 miles from home, so part of Carroll County kind of fits that bill. But they also take into account when there just might be a medically necessary reason, even if they are not quite 40 miles away.”
So far in 2018 alone, between the Baltimore-area Hope Lodge and a partnership program with some hotels, the American Cancer Society has provided more than 8,500 free nights of lodging to patients, worth $1.6 million, according to Burdette.
At Carroll Hospital and Sinai Hospital, Sweeney said, there are a number of programs available to help people with the cost of cancer treatment.
“We offer a financial assistance program,” she said. “It’s based on income, family size. They could either qualify for a 100 percent reduction, 50 percent reduction or 25 percent reduction based on their criteria.”
Carroll Hospital also has resources that can help patients like Kight pay for things associated with the disruption of getting cancer treatments, outside of the cost of those treatments themselves, according to Kromm.
“We have a patient assistance fund at the hospital we use for that and there is something called Zaching Against Cancer,” she said. “We get some funding every quarter to be able to spend however we want on patients, just to make things easier for them. So whatever that is. I’ve gotten heating oil for patients and gas cards, grocery cards. I paid somebody’s tax bill with it because it was due and they didn’t have money to pay it.”
And then there is the Maryland Cancer Fund, Kromm said, which provides $20,000 grants to help offset the cost of cancer.
“In every county, only some counties choose to take advantage of it, and it has to go through the Health Department,” said Barbara White, who manages the program for the Carroll County Health Department.
“It goes back to 2011, when it first started. We had one patient who was referred,” White said. “Now that the cancer center is involved, we usually get 14 to 16 patients referred a year.”
Many of those patients are older people on social security and Medicare, White said, for whom $15,000 co-payments could be crippling without these grants. Eligibility is income-based, she said, set at 250 percent of the federal poverty level, so “for one person, they can make just over $30,000.”
It’s a program that fills a real need for income-constrained people, White said, and she hopes people will elect to support it when filing their Maryland taxes.
“The program is funded through tax returns, not a lot of people realize that,” she said. “If people gave $1, $5, it would be a help.”
For Kight, the cancer center at Carroll Hospital was the key to connecting her with the resources she needed to make it through treatment, as stressful as it has been: To replace her water heater when it died, and to sign her up for Meals on Wheels.
“They have been so supportive. They have been one of the highlights of the whole thing,” Kight said. “They keep my spirits up.”
But a key thing about that help, according to Kromm, is that people should ask about it — she and other hospital staff don’t know what people don’t tell them, and they could be leaving money on the table.
“People don’t like to talk about it. Nobody likes to talk about money,” she said. “If finances are really a concern ... talk to us about it. If we don’t know that you’re worried about it, we can’t help you.”