Scott and Cindy Spence have been battered by two afflictions in the latter half of their 27-year marriage: Cancer, and debt.
They're surviving both, Cindy said. So far, anyway.
"Our debt is hopeless, but we don't feel hopeless," the Rathdrum resident said. "We've learned to value every day like we never did before."
They’re well aware that they’re part of an unfortunate fraternity: The tribe of cancer-ridden families who work, yet find their financial hole ever deepening.
Scott, who always boasted a healthy lifestyle, still doesn’t know what caused his multiple bouts of cancer in the past 15 years, melanoma the most recent.
The battery of surgeries and intravesical therapy has drained him physically. But that almost doesn’t compare to the oceanic cost of his treatment, Cindy said, spanning cancer centers in Seattle, Spokane and Kootenai Medical Center.
Scott's Seattle employer eliminated his position after his initial diagnosis. The 61-year-old’s current company doesn’t provide insurance. Cindy, who runs a home business, Kozy Pillow, is uninsured.
“He could get on insurance now, but his premiums would be $1,000 a month with a $10,000 deductible,” Cindy estimated. “You can’t get insurance when you have cancer.”
They try to make it work with their finite resources — which, they’re discovering, doesn’t work.
They sold their home, drained their savings, liquidated their assets and 401k. Renting a home now, they haven't had a vacation in a decade.
Scott, who would rather work than go on assistance, has been back at work designing kitchens mere days after surgery, even forgoing follow-ups to avoid extra bills.
"We can't meet (the expenses). It's not possible,” Cindy said, adding that their medical expenses hover around six figures. “It's really on God.”
To top it all, Scott just found another growth on his chest.
"We had all the things most people our age would have, and cancer took it all away," Cindy said. "We are thoroughly convinced a good part of why the cancer returns is the stress of bills from the cancer."
It sounds assuring enough, that months to years of treatment can buy more time for cancer patients.
But even when cancer doesn't cost a life, treatment creates a whole other burden.
More than 1 million cancer survivors are foregoing cancer care because of cost, according to the American Association for Cancer Research.
It's easy to see why. The National Institutes of Health tally health expenditures associated with cancer in 2007 at $103.8 billion. About $440 million was spent on Idaho cancer patients’ direct medical costs in 2008.
Here in Idaho, low-income cancer patients regularly plummet to the safety net of county and state assistance. Counties offer $11,000 in assistance for the medically indigent, after which the state Catastrophic Health Care Program takes over.
CHCP statistics show that 335 indigent cancer patients relied on assistance for treatment costs in all 44 counties last fiscal year. Of those, 83 patients were from Kootenai County.
"Cancer has the biggest number of patients in Kootenai County," said Kathryn Mooney, CHCP director, when comparing statewide indigent applications.
Idaho counties’ and state assistance provided a total $5.1 million to indigent cancer patients last fiscal year, Mooney said.
Of that, $987,400 went to Kootenai County patients.
"With cancer, it's pretty hard to stay under $11,000," Mooney observed.
The Cost Breakdown
When Cindy Johnson, pharmacy supervisor at Kootenai Cancer Center, talks about the price of drugs for cancer treatment, she laughs.
And she groans.
"You do not want to get cancer and not have insurance," Johnson said.
She pointed to the slew of cancer-related agents used in attacking cancer cells, not just in chemotherapy and hormone therapy but also for abating treatment side effects.
The costs compare to building a house. Buying a luxury car. Breakfast, lunch and dinner at Tiffany's.
The cheaper, generic agents run about $500 to $600 per IV dose, Johnson ballparked. New oral agents can run up to $20,000 for a month's supply.
Top-shelf IV agents, like those recently produced to treat prostate cancer and malignant melanoma, can cost $50,000 to $60,000 per dose.
"That does seem excessive to me," Johnson said. "Every new drug, it's like, 'It's how much?'"
The soaring prices are what it takes for pharmaceutical companies to make money, she said. Companies invest exhaustively into researching new drugs, many of which are dead ends. To recoup their losses, companies charge accordingly for what does work.
"When they're successful, they've got to cover research and development," Johnson said.
Apparently they’re succeeding. Eli Lilly and Company, the 10th-largest pharmaceutical company in the world and a producer of chemotherapy drugs, topped $24 billion in revenue in 2011.
That said, the average cost of cancer treatment is $65,000 per case, said KCC Oncologist Karie-Lynn Kelly.
To break it down, a round of chemotherapy ranges from $20,000 to $30,000, Kelly said.
That can get steeper with certain drug combinations, she noted.
"Some agents are significantly more expensive," she said, citing one that costs $10,000 a month. "A patient might be on that for many months, or even years."
A course of radiation therapy ranges from $10,000 to $80,000, depending on length and intensity of treatment, Lynn added.
The average radiation therapy falls within $30,000 to $40,000.
While drugs drive up chemotherapy costs, Kelly said, it’s the expense of technology to blame for radiation therapy’s pricetag. Administered daily, radiation treatments can go on for several weeks, Kelly said.
As for cancer-related surgeries, KCC staff dubbed the cost range too vast to average.
"Both Medicare and private insurance will often cover the cost of treatment," Kelly said, adding that the center’s pre-authorization department determines if treatment plans can be covered.
When patients can't afford care on their own, Johnson said, KCC’s social workers step in.
That involves helping patients fill out tomes of paperwork to seek assistance from foundations, pharmaceutical companies and the county, she said.
The Kootenai Health Foundation doesn't help cover treatment. The foundation did donate $28,047 last year to help 218 patients cover treatment-related items like dietary supplements and emergency prescriptions.
"We really work hard with these individuals, to make sure people don't do without medication," Johnson said. "Sometimes it requires going back to the physician and saying, 'Is there something else that might work?'"
When other avenues fail, patients are classified as self-pay, Kelly said. Those are responsible for working out a payment plan with the cancer center and providers. KCC saw roughly 100 self-pay cancer patients last year.
"Patients have never not received treatment," Kelly emphasized.
Treatment Just One Expense
There’s a bevy of financial burdens beyond treatment that cancer patients face, reminded Melissa Halverson, executive director of Cancer Patient Care.
"When somebody is stuck with cancer, whether a parent, child, grandparent, somebody is not going to be able to work," Halverson said. "There's often a drastic reduction in income, alongside a dramatic cost increase."
Her nonprofit helps families afford basic living expenses as treatment bills pile up. CPC's assistance includes covering utility and grocery bills, providing gas vouchers for treatment commutes.
Applications for help have tripled in the past two years, Halverson said.
The nonprofit serves about 300 to 400 applicants a month in North Idaho and eastern Washington.
"It's really just an increase in overall need, because of the economic climate," Halverson said. "We've seen people lose their homes because of having to deal with cancer and loss of income in the process."
Just getting to a cancer diagnosis will deplete a checkbook, said Gail Turley, coordinator of Panhandle Health District's family planning program.
Screening costs pile up, too, she said. That’s why her program helps cover breast cancer and cervical screening low-income, uninsured or underinsured individuals.
At Medicare rates, Turley said, an annual breast exam is about $110, a paptest another $100, a trip to the gynecologist for biopsies $1,000.
A mammogram costs about $400, she added, sometimes followed by costly ultrasounds.
"For low-income people, it's just impossible," she said.
The PHD programs provided 447 women in the five northern counties with mammogram vouchers last year, and 660 women with breast and cervical cancer screening. The services are possible through the Susan G. Komen for the Cure program and the federally funded Women's Health Check.
"This past year was the first year we ran out of our Komen funding,” Turley said, blaming the economy. “We had to cut people off.”
She also signs women up for Medicaid to cover treatment, she said, through the WHC program.
"The worst situations I have seen will be those women who make $5 over income that qualifies them for these programs," she said. "They're still dirt poor, but they have nowhere else to turn."
Some can still apply for county indigent assistance, said program Manager Todd Rickard.
County Assistance fielded 57 assistance applications for cancer cases from January to October this year, Rickard said.
Kootenai County spent $292,000 on applicants' cancer treatment costs in that period.
Applicants will have to repay what they're given, Rickard reminded.
"Basically, we are the program of last resort, if a person has exhausted any or all forms of payment or insurance," he said.
Insurance Might Help
Most look to their insurance to cover the bulk of cancer treatment.
What they receive depends on what is listed in their already signed contract, said Josh Jordan, spokesman for Blue Cross of Idaho.
"Somebody's coverage is set up at the time they enroll," he said.
Blue Cross and most insurance companies follow the guidelines of the National Comprehensive Cancer Network to choose what cancer treatment to cover, Jordan added. The alliance of cancer centers examines today's best practices, he said.
"We only cover procedures proven to have medicinal value," Jordan said. "If a provider or member wants a procedure that has not been shown to have medicinal value, we won't provide coverage for that."
The financial impacts on an insurance company when a member is diagnosed with cancer are tantamount to any other catastrophic event or major disease, he said. The higher the expenses, the more members will have to pay in.
"The effect is not just cancer but all those sorts of events," Jordan said. "The rising costs of healthcare in general leads to rising costs of health insurance."
Mark Fisher, insurance broker with Advanced Benefits, dubbed cancer as one of the most expensive diseases somebody can acquire.
"That's the beauty of most insurance plans having a stop loss," Fisher said, noting how members often only pay $3,000 to $8,000 out of pocket a year before their insurance takes over.
Even that doesn't leave a patient totally insulated.
Jennifer Poole, mission manager with the Susan G. Komen for the Cure in Boise, said that though she was insured, her family forked out $25,000 for her breast cancer treatment. That included numerous surgeries, and several years of hormone therapy.
"We had to borrow money, had to get help from people," Poole said, adding that her treatment’s duration made the out-of-pocket costs accumulate.
The family of six ended up filing for bankruptcy, she said.
"We're still rebounding," she said.
But when choosing between life and money, Poole pointed out, the decision is pretty simple.
"It's one of those things that it's just money," she said. "Frustrating as it is, you do what you have to do. It's just going to have to take time, and hopefully compassion from the bill collectors."