A cancer diagnosis could break the bank, but it doesn’t have to.
In the midst of being treated for breast cancer, Glenda Chambers developed a problem: her immunity crashed. Her doctors prescribed Neupogen (filgrastim), a drug that boosts white blood cell production, and sent her home. A two-week supply of the drug was delivered to her home in Mobile, Ala., with a bill—Chambers’ 20 percent co-pay. It was Christmas Eve in 2011.
“I didn’t have $899,” she says, recalling her panic at seeing the invoice. “Everything was closed by the time I received it.” And so began a holiday frenzy to cover the unexpected balance. She scraped together her checking and savings accounts. She sold a few pieces of jewelry and borrowed the rest from friends and family members.
An events coordinator for the Mobile Police Department, Chambers had a good job with health insurance. But the nickels and dimes quickly added up. “When you’re going to see your doctor two and three times a month, a $40 co-pay mounts up,” she says. Moreover, she had gas expenses and food costs to feed the people who came to help her out. The situation was complicated by the fact that she couldn’t work her second job—it was just too demanding.
Now that she’s in the home stretch of reconstructive procedures, she still sees her oncologist regularly and receives a heart scan every three months (which includes a $40 office visit co-pay). Add to that the $20 monthly out-of-pocket expense of Arimidex (anastrozole), which she’ll be taking for the next five years.
It’s no surprise that patients are worried about how much their cancer experience will cost them. According to a 2006 analysis by the global think tank RAND, the annual out-of-pocket costs for more than one out of 10 cancer patients exceeded $18,000. Overall, medical costs are believed to be a factor in about 60 percent of personal bankruptcies in the U.S.
“One of the first things that pops into a patient’s head is, ‘I’m going to be broke,’” says patient financial services manager James Carey of the Huntsman Cancer Institute in Salt Lake City. And, he adds, in the short-term, it’s likely to get more difficult, as soaring costs and uncertainty about healthcare reform intensifies competition for every penny. Still, he holds out hope: “We have programs available. You just have to work with us."
It is really gutwrenching to realize that you have hope in a certain kind of treatment, but you can’t afford it without bankrupting your family.
Regardless of a patient’s cancer diagnosis or personal circumstances, experts universally caution against dodging the money question. For those who are good with money, the challenge of paying for cancer care may be met more easily. But those who have never been very good with finances should find someone they trust who has the necessary management skills, says Amy Horyna, patient and family support manager at Huntsman. Cancer treatments and recovery can be debilitating, and “it’s easy to lose periods of time and lose track of things,” she says.
“The IRS website has some great free publications on deducting medical costs if you can’t afford a professional,” says Martin Shenkman, an attorney who specializes in planning for chronic care. “Figure out what costs are tax deductible—if you’ve never itemized before, this may be the year to start,” he adds. “Tax savings may come in handy as you try to budget for the new costs you face, and you may have to move some financial assets around if the possibility of a big bill is on the horizon.”
But patients should carefully consider which funds they use in order to minimize tax costs, Shenkman cautions. For example, with strict requirements about using funds from an individual retirement account (IRA), patients will likely want to avoid triggering an income tax, or worse, a penalty. “If you have to sell stocks, try to match gains and losses to avoid having a tax cost added to your budget worries,” he adds.
If the money’s not there, patients still need to research cost implications. Meg Gaines, director of the Center for Patient Partnerships, a patient advocacy organization, argues that this is all part of patients being captains of their own healthcare ships: Patients need to understand their diagnoses and their treatment options.
“You don’t have to understand them at the genetic, molecular level. You just have to understand them at the level necessary for you to apply your values,” she explains. That challenge comes quickly into focus for patients with a rare or advanced cancer diagnosis who’ve found a treatment that they feel good about. “It is really gut-wrenching to realize that you have hope in a certain kind of treatment, but you can’t afford it without bankrupting your family.”
How much an individual’s cancer will cost is ultimately driven by many factors: the patient’s insurance, who treats the patient, the type of treatment the patient receives, and how the patient’s cancer and body respond to the treatment. Most of these are beyond a patient’s control, but that doesn’t mean patients have to passively accept them.
The first fiscal element is projecting direct costs. In addition to doctor visits, patients should think about prescriptions, scans, lab tests and hospital stays. Depending on their health insurance, each of these costs may be governed by a different co-pay and deductible scheme. For many cancers it’s also common to be treated by a team—surgeons, radiologists and medical oncologists. Co-pays can mount quickly, so patients need to know the rules of their policy.
It’s also common, particularly in the early stages of diagnosis, to be referred to another physician or to seek a second opinion. Second-opinion visits are often out of network, but patients’ own doctors may refer them to someone just down the street who is in network.
When developing a plan of care, patients should ask their medical team and their insurance company to estimate the total cost. If it’s unaffordable, they should ask if there are less expensive options that may be equally effective. Oncologists may favor a more expensive treatment not based on efficacy or established guidelines, but because of their patients’ experience. If they know that cost is an issue, they may be able to offer less expensive options. Costs and coverages also vary in a hospital versus an outpatient facility. Either way, patients need to make sure they know what kind of approval is needed before treatment begins. And, thanks to data on inpatient and outpatient procedure costs made available by the Centers for Medicare & Medicaid Services, it’s now possible for patients to price check and shop around for services. (Visit cms.gov and enter “Medicare Provider Charge Data” into the search field.)
With annual costs for some advanced cancer drugs soaring well beyond $100,000, medication can quickly shatter even the most well-planned budgets. The key question is whether the drug is on the patient’s insurance formulary—the preferred drug list. If not, patients must either wage a fight or face an enormous bill in their future. If the doctor is set on a particular drug, patients should talk to the oncology pharmacist. They often manage millions of dollars of medication and may have a creative solution or a favor to call in or at least know how to find middle ground with the doctor. And it’s not just the chemotherapeutic agents. Drugs to treat nausea and other side effects can quickly bust the budget, where a less expensive drug—generic or over-the-counter— may work as well. Ordering some drugs through the mail may cut down costs, too. Costly scans and other tests can sometimes be reduced with little or no impact.
With some cancers, the best bet for both care and cost may be a clinical trial. If a patient’s disease matches a trial being run by the National Cancer Institute (NCI), much of the care may be covered by the NCI, including travel costs. Most trials, however, may require patients or insurers to pick up standard costs of care, but insurers are not always eager for patients to take this risk. (State laws governing insurance coverage for clinical trials vary.)
Indirect costs of care can be harder to predict. Cancer treatment can lead to a variety of supplemental care, including physical or occupational therapy to recover from surgery or treatment side effects. Patients may need medical devices to assist in their day-to-day recovery, or counseling to deal with the emotional impact of their disease. Coverage for these benefits varies widely.
Even arguing with insurers can be costly. Patients could wind up paying a questionable bill to protect their credit rating. When pressed, the insurance company will pay, eventually. “Insurance [companies] make money by holding on to money,” Gaines says. An insurance company can profit from simply delaying payment for an additional six weeks.
If you’re going to throw all the bills in a shoebox, don’t forget the box is there. And don’t forget to ask somebody for help with it. Just be realistic.
And then, there is the non-medical realm: getting to appointments, paying for parking or perhaps even traveling long distances for treatment or consultations. Patients may need a wig or new clothing if their weight changes significantly. They may need nutritional supplements to stay healthy. Or legal help to prepare their estate for a worst-case scenario or to challenge a disability ruling. What if patients miss work because of treatment, or can’t provide care for children or parents?
If patients feel a cascading effect, they’re not alone. “For people who have been pretty healthy most of their lives, finding themselves in a situation where they have to have multiple medical things done, all at the same time, it all feels like a big giant ‘Gotcha,’” Horyna says. “Cancer has become more of a chronic condition. They don’t know when it’s going to end, and that feels like so much.”
Indeed, it’s important for patients to remember to keep living their pre-diagnosis lives. Money may be tight, but spending it on a family trip or a special meal could ultimately be more important than a few months of austerity. It’s an unwelcome thought, but the worst-case scenario can happen. “Try to keep that in perspective and make sure some of those quality of life decisions are made,” Horyna says. “I think it’s critical, and makes all the difference for people.”
Help is available for many challenges, but patients have to know who to ask. Many cancer centers have social workers available who can facilitate just about anything, including finding free or low-cost transportation and helping patients file for disability or Medicare benefits.
Patient advocates have also become essential. Glenda Chambers appealed to the Co-Pay Relief Program of the Patient Advocate Foundation to get help with her Neupogen bill. Since April 2004, this program has covered more than $190 million in pharmaceutical co-pays for more than 95,000 patients.
Pete Daly first approached the Center for Patient Partnerships for help in 2002 when he received a diagnosis of stage 3 melanoma and was given a 50-percent chance of survival. More than 10 years and two clinical trials later, he now works as a patient advocate and has his own unique perspective on the difference between rolling the dice and balancing medical costs. “Get the best care you can, and do that with some [disregard] for the cost implications,” he counsels. But don’t ignore cost completely.
“If you’re going to throw all the bills in a shoebox, don’t forget the box is there,” he says. “And don’t forget to ask somebody for help with it. Just be realistic about it,” he adds. And don’t let cost issues or insurance approvals steer the way.