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 

 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&mdash;generic or over-the-counter&mdash; 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.

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A cancer diagnosis could break the bank, but it doesn’t have to.

Financial Fix: Developing a Plan to Pay for Cancer Care

The amount of paper generated by a cancer diagnosis can quickly become overwhelming. Below are tips for keeping information organized and accessible:

 It could be as simple as a three-ring binder or as complex as an electronic spreadsheet. Designate a section for each area related to cancer care, such as medical procedures, charge summaries, deductibles paid, health insurance, personal details and contact information. Include a calendar with appointments noted. Have a separate file or section for each medical center or treatment facility. Keep all receipts, records and requests, regardless of how insignificant they may seem.

 Include the official treatment regimen and any other regularly needed information that may be helpful when filing claims or resolving billing issues.

Ask the insurance company for a case manager.

 Make notes of all conversations, including dates, names and other appropriate details. Identify one person in each billing office to communicate with.

Include potential loss of income from missed work, expenses not covered by insurance and increased daily living costs.

Make sure all insurance policies are current and correct.

 Always refer to them by name and number in all communications.

 Friends and family members can coordinate regular monthly bills so more attention can be devoted to insurance issues.

Make a list of tasks that need to be completed.

 Check them off the list when they are accomplished.

Content

Get tips on keeping information, receipts, notes and legal papers organized and accessible.

Get Organized

While most people have health insurance, many never pay much attention to it until they experience a serious illness or accident. Needless to say, health insurance can be very confusing, as there is a dizzying array of health plan options, complicated by each state having different rules and regulations.

Many individuals may be unaware of the specifics of their coverage and how to best use their benefits until they take a crash course in an emergency room or doctor’s office. So, while a cancer diagnosis isn’t the best time to figure out the details of what a policy will cover, a clear understanding of the plan can help patients avoid unexpected costs and associated problems.

“The biggest problem I see when people are denied coverage for cancer is the bar for pre-existing conditions,” says Joshua D. Silverman, of the Silverman Law Firm in Richmond, Va., a firm that specializes in medical issues. “My advice for anyone, particularly for people with a diagnosis of cancer or with a family history of cancer, is to make sure they never have a gap in coverage. So long as there is no gap in coverage, a health insurer should not be denying people coverage for pre-existing conditions.”

The Affordable Care Act (ACA) is supposed to solve many of the current problems associated with insurance coverage, such as annual limits and preexisting condition exclusions. “But until it is fully implemented, we really do not know how well it will work,” Silverman says.

Additionally, lifetime limits on coverage will be phased out, so no one should “run out” of insurance. “I don’t think anyone really knows how much these plans will cost,” Silverman says. “The law does limit health insurers’ administrative costs under the 80/20 rule.”

In other words, at least 80 percent of premiums must go towards paying claims and no more than 20 percent of premiums can cover administrative costs. Under the ACA, low-income Americans without coverage will be able to get insurance at low or no cost, typically through Medicaid.

Physicians often work with a number ofinsurance carriers and often do not know thespecifics of coverage.

One risky assumption that individuals often make is that their healthcare provider is knowledgeable about their insurance, when that is likely not the case. “Physicians often work with a number of insurance carriers and often do not know the specifics of coverage,” says Jen Flory, director of the Disability Rights Legal Center in Los Angeles. “They may have certain specialists they work with, for instance, but who may not be in the patient’s insurance network.”

“Patients do need to do their homework and call their carrier,” she says.

Currently, insurance can be broadly divided into coverage that is offered through private plans and those that are offered through federal and state governments.

Private health insurance is available through individual plans, or via groups, such as an employer or association. Health plans provide coverage for preventive care, diagnostic tests, injuries and illnesses, but there are differences in how the plans function. These variations will reflect how services are paid for, the benefits that are included, the degree of flexibility in choosing healthcare providers and the percentage of cost that is covered.

 also known as fee-for-service plans, are often the most expensive choice, but they also provide the greatest flexibility when selecting healthcare providers. Patients can choose any physician or specialist without obtaining prior approval.

 is usually a less-expensive option, but patients must use doctors, hospitals and other practitioners within a restricted network. Co-payments are often lower, but a variety of cost containment processes are enforced and the choice of providers is limited, and unless it is an emergency, the HMO will not cover care given by a practitioner outside of the network. Moreover, a referral from a primary care physician is usually required before patients can seek care from a specialist. HMOs must offer out-of-network coverage when patients do not have adequate access to providers and specialists who can meet their healthcare needs, but prior authorization is necessary.

 while more expensive than HMOs, also offer lower copayments than fee-for-service plans, but with more flexibility than HMOs in terms of selecting a provider. The insurer typically offers the most coverage for staying within the “network” of providers, but patients who choose to go outside the network will incur higher expenses.

 are funds (not subject to federal income tax at the time of deposit) that can be used for medical expenses by individuals who are covered by high-deductible health plans. “Health savings accounts do two things,” Silverman says. “They keep people from being tempted to divert money set aside for medical conditions for other things, and they offer tax advantages.”

 is the nation's health insurance program for people age 65 and older, which consists of several parts:

 covers inpatient costs, such as those incurred in hospitals, nursing homes and hospice;

 provides coverage for healthcare providers, outpatient care, home health care and many preventive services;

 (Medicare Advantage) is a plan offered through approved private companies that includes Parts A and B, and sometimes Part D, but may also offer extra coverage, such as for vision, hearing, dental and health and wellness programs;

 helps lower the cost of prescription drugs in the outpatient setting; and

is a supplemental insurance offered by private companies to fill the “gaps” in Medicare coverage (some Medigap policies may also cover certain benefits that Medicare doesn’t cover).

 run by both the federal and state governments, is health insurance for low-income individuals and those with certain disabilities. The criteria for Medicaid eligibility vary from state to state. Cost sharing also varies, but is generally extremely limited for most program participants.

The Children’s Health Insurance Program,

 like Medicaid, is a program jointly funded through the federal and state governments that provide health coverage to children whose families do not qualify for Medicaid but who are unable to afford private coverage. 

 are programs that provide healthcare coverage for military personnel and their families. TRICARE covers active and retired military personnel and their dependents, survivors and, in some cases, former spouses. CHAMPVA covers veterans and their dependents and is run through the Department of Veterans Affairs (VA). The VA shares the cost of services with eligible beneficiaries. Those who are eligible for TRICARE are not eligible for CHAMPVA.

There are patient assistance programs and,while they don't cover all expenses, they can help.

A cancer diagnosis can be especially difficult for those without insurance. However, there are some options for the uninsured and underinsured that can at least help pay for some care, Flory says. “There are patient assistance programs and, while they don’t cover all expenses, they can help.”

Some are specific to cancer type or geographic area, and some organizations can assist with co-pays and other out-of-pocket expenses for those who have insurance.

One example is CancerCare, which provides assistance for those who cannot afford medication co-payments or who need help with indirect treatment-related expenses. The AVONCares Program for Medically Underserved Women provides financial assistance to low-income and uninsured women, while the Chronic Disease Fund helps patients with chronic illnesses who have insurance but can’t afford their medications.

There are also pharmaceutical assistance programs offered by drug companies and other organizations, Flory says. The Cancer Legal Resource Center provides a telephone assistance line (866-843-2573) for free, confidential information about relevant laws and resources for the caller’s particular situation.

The Health Insurance Marketplace, required by the ACA, provides a way of obtaining insurance or getting a more comprehensive plan. Those who may or may not have access to employer coverage, or who are ineligible for public coverage, might have more choices in these exchanges, which are operated by individual states, by the Department of Health and Human Services (HHS) or in a partnership between a state and the HHS.

Finally, coverage may be available through the Consolidated Omnibus Budget Reconciliation Act (COBRA) and the Health Insurance Portability and Accountability Act (HIPAA). COBRA allows employees to continue receiving group health benefits for a limited time after losing coverage due to job loss, reduction in work hours, etc. HIPAA allows insurance to be purchased after the COBRA period ends, for persons who are not eligible for any public coverage. HIPAA guarantees that insurance can be purchased without pre-existing condition exclusion periods, and plans are available in every state. These plans are expected to end in 2014 as less expensive options become available through the Health Insurance Marketplace.

Concerns about insurance coverage should be addressed quickly.

Risky Business: Resolve Insurance Concerns Early

Expenses that are not covered by insurance and for which the patient is responsible.

 The amount that an individual must pay out-of-pocket before the insurance coverage kicks in.

 A predetermined, flat fee that the patient pays for covered healthcare services, in addition to the portion covered by insurance.

 The amount the patient pays for a covered service after meeting the deductible, calculated as a percentage of the allowed cost for the service (for example, a 20 percent co-insurance payment for a $100 covered service would be $20).

 A plan that provides extra coverage during a major health event (often with very high deductibles and fairly low premiums).

 An agreed-upon fee that an individual pays for specified coverage of medical costs during a defined period of time.

Know the terms that go into your health insurance plan. 

Speaking of Insurance

Cancer and its treatment can interfere with the ability to work, and some patients may need to utilize long- or short-term disability benefits. However, options may be limited for some patients.

Josie Doresis of Woodbridge, Va., found out too late that she wasn’t eligible for long-term disability coverage from her employer. After receiving a breast cancer diagnosis, she applied for short-term disability during her treatment. But after six months, she was still unable to return to work and needed to take advantage of her employer’s long-term disability benefit.

“But I didn’t realize that it had a ‘no preexisting condition’ clause,” she says.

Many employers offer short-term disability benefits to replace lost income during treatment, but only a handful of states (California, Hawaii, New Jersey, New York and Rhode Island) offer short-term disability programs.

But patients who do not reside in those states or who do not have any type of disability insurance or benefits face a more difficult situation. At the federal level, Social Security provides disability benefits in two ways: through the Social Security Disability Insurance (SSDI) program and the Supplemental Security Income (SSI) program.

But Social Security does not provide for shortterm disability, and eligibility criteria are strict, says Kathleen Walsh, a lawyer based in Virginia who specializes in disability law. “To qualify for SSDI, you have to prove that you will be disabled for 12 months.”

Even if patients don’t know whether they will be disabled for 12 months, they should apply anyway, she says. “You can always withdraw the application and there’s no harm done by applying.”

“If you don’t get approved during the first round of reviews, then you have to appeal,” she says. “And patients should appeal if they feel they are eligible, because by the time they get to the level of the administrative law judge, approximately 62 percent of the cases are approved.”

After 24 months of SSDI benefits, patients become eligible for Medicare. Walsh also points out that receiving disability benefits doesn’t mean that a patient can’t work at all. “You are able to work limited hours, you just can’t be able to return to work full-time,” she says. “So, the extra income is helpful.”

Doresis applied for SSDI but was denied. Before appealing the decision, she went to a Social Security office and spoke with a representative. “I was told to be honest and not to try to sugar-coat the treatment,” she says. “I was told to explain everything.”

Despite supplying all of the information, Doresis’ disability application was still denied. At this point, she retained an attorney who helped her receive approval. For some reason, she says, the Social Security Administration had not received all of the necessary documentation, resulting in the denials.

Although Doresis is happy that she finally received approval, she admits it was an exhausting process. “It really doesn’t seem right to make people who are fighting for the lives jump through so many hoops,” she says. “I also went through all of my resources and had to pay an attorney.”

Patients who haven’t worked or who have health insurance may still receive benefits under the SSI program. To be eligible, patients must have limited assets and income. “They can’t have assets above $2,000 to qualify for that program,” Walsh says. “So, if their spouse is working, they don’t qualify most of the time."

Cancer patients should research their disability options.

Options for Disability

In 2010, while leading a focus group in Knoxville, Tenn., Joanne Buzaglo looked around the room and saw a group of people who appeared highly educated, well-dressed and comfortably middle class. She had been helping people with cancer cope with the social fallout of the disease for 20 years. By that time, she thought she’d seen and heard it all. But Buzaglo found herself speechless as, one by one, the people around the table described their struggles with one of cancer’s most toxic side effects: medical debt so crushing that it cost patients everything.

“It was the most poignant moment I’ve ever felt,” says Buzaglo, vice president of research and training for the Cancer Support Community. “People felt shame and worry, and they were often too overwhelmed to take action.” Buzaglo and her team convened similar groups across the country to update 

Frankly Speaking About Cancer: Coping with the Cost of Care

, a program aimed at helping people manage the cost of cancer treatment.

Health care is generally expensive, but cancer care tends to rack up the largest of medical bills—at precisely a time when people are least able to cope. Medical insurance cannot cover all the costs. Debt piles up quickly, and soon patients can find themselves fighting not only for their physical lives but for their fiscal lives, as well. To make matters worse, patients often have little or no control over the cost of services. Even when they are vigilant about choosing network providers, they soon learn that hospitals contract with providers who may be out of their network, triggering penalties on top of hefty expenses. And newly released data from the Centers for Medicare and Medicaid Services show that hospitals&mdash; even facilities in close vicinity&mdash;charge vastly different prices for the most common medical procedures. With so much out of a patient’s control, it’s more important than ever to craft a plan for managing debt from the cost of cancer care.

Early in their cancer experience, patients should develop an action plan for managing medical debt— one that includes evaluating their insurance and asking their healthcare providers if they provide financial assistance, discounts and extended payment plans, says Mark Rukavina, of Community Health Advisors. He urges patients to contact a social worker to get started identifying places that offer assistance, and then meet with a patient accounts representative and ask for help in assessing finances and applying for aid.

The worst thing anyone can do is to ignore a bill, Rukavina says, because it may be sent to a collection agency, triggering another set of complications, such as ruined credit. Reaching out to government leaders can sometimes help in identifying local, state or community services. “If people don’t ask for help, they’re not likely to get it,” Rukavina says.

Bob Kail and his wife, Patte, sought financial help following his diagnosis of late-stage colon peritoneal carcinomatosis in 2012. Four tumors in different areas brought extensive surgery, including the removal of his colon, and affected nearly every aspect of their lives, in addition to the lives of Patte Kail’s two children from a previous marriage. Because Kail had to use an ileostomy and couldn’t lift heavy objects, he could no longer work as a truck mechanic. The health insurance he received through his employer carried a $5,500 deductible, which Kail quickly met. But when his employer could no longer pay for Kail’s insurance, Kail had to obtain coverage via the Health Insurance Portability and Accountability Act, with premiums of nearly $700 a month.

People also need to scrutinize insurance statements for accuracy, and relentlessly pursue billing errors, says Karen Pollitz, a senior fellow at the Kaiser Family Foundation. In fact, the Commonwealth Fund’s 2012 Biennial Health Insurance Survey reported that in 2012, 4 percent of adults ages 19 to 64—an estimated 7 million people&mdash;were contacted by a collection agency because of an error on a medical bill.

Patients should ask a friend or family member for help in deciphering any charge that seems suspicious and figuring out what service may have been paid or denied incorrectly. Pollitz, who is also a survivor of cancer, recalls receiving insurance statements that were “cryptic and infuriatingly vague.” Many phone calls to the insurance company’s billing specialist, and many hours of persistence, may be necessary to track down exactly what services were rendered, especially when the insurance claim indicates something as indistinguishable as “medical services” or “laboratory services.” To obtain the proper information, patients may have to ask the insurer for every detail of a particular claim, the actual billing codes and the exact description of each service, as well as who ordered the service. Insurance companies are required by law to provide that information, Pollitz says.

Patients should follow up immediately with insurance companies, using the formal process of appealing a billing mistake or a treatment that’s been unfairly denied, and include all supporting documentation. “Don’t take the word of the customer service representative at the other end of an 800 number,” Rukavina says. “Pursue it formally and get a formal response. Copy the state attorney general or the state office of protection.”

“When you’re on Social Security, that’s 70 percent of your income,” Patte Kail says. “We worry. Bob especially worries, and he doesn’t need the extra stress. With Bob, I try not to discuss finances until I have to. We have a house with two and a half years left on a mortgage. I have a pre-teen and a teenager, and I still have to be able to give to them; this affects everyone.”

The Kails turned to their state representative for help but found none, so now they are seeking help from their U.S. representative in Washington, D.C. While awaiting Medicare eligibility, which typically takes two years, Kail applied for public assistance through the state of Pennsylvania, but his Social Security disability payments may mean that his income is too high. Many of Kail's out-of-pocket expenses aren’t covered, including 25 percent of the wound care supplies for his ileostomy and unhealed surgical incisions, as well as some of his home health care and a 50 percent share of ambulance bills.

The Kails are still paying a modest monthly amount toward four hospital bills and home health care from 2012, which they negotiated with the institutions. “They send you a bill for $1,500. You look at them and say, ‘Yeah, really,’” Patte Kail says. But help is available for those who qualify, she adds. She suggests seeking out a social worker for assistance with applications. A $10,000 grant from the CancerCare Co-Payment Assistance Foundation pays for Kail’s chemotherapy drugs but not for his steroids and antinausea medication. 

After Martha Jacobs of Chicago received diagnoses of breast and colon cancer between 2010 and 2012, she continued working through her chemotherapy and radiation treatments. But she lost her job—and her health insurance&mdash;in 2012, and had to obtain COBRA coverage. Jacobs had to deal with three different hospitals, calling each to set up an affordable payment plan.

“Each has been very helpful in taking what I can afford at the time of payment,” she says. “At a very stressful time, this has helped me in so many ways and has given me peace of mind and the ability to focus on what lies ahead.”

While a bill is in dispute, patients should call their doctor or hospital and inform the billing department of the dispute, explaining that they’re trying to sort it out and asking them to place the bill on hold. “Otherwise, the second they put the bill in the mail, a clock starts ticking, and often after 60 to 90 days, if the bill is not paid, it may be moved to delinquent status and sent to collection,” Rukavina says.

Another option: Patients can contact faith-based or other nonprofit organizations to ask if emergency funds might be available. Also, the federal government lists assistance programs at 

. Use the search terms “consumer assistance” to locate programs in individual states.

Additional potential funding sources for resolving medical debt include: 

> Viatical settlements (selling a life insurance policy to a third party) 

Some cancer patients choose to modify their mortgage by asking the lending institution to temporarily lower the interest rate and, thus, the monthly payments. Such a modification can still be added to a credit report and can negatively impact a credit rating, says Rodney Anderson, a mortgage lender in Dallas and author of 

. Plus, the fees and interest don’t go away but get added to the back of the loan.

With some clients, Anderson sees confusing medical bills going to collection agencies because patients believe they are not bills or that third party payers are handling them in total. “If you find an unpaid bill from a collection agency, call the agency and ask for a validation letter for the debt,” Anderson says. “But also ask the provider to remove the item from your credit report before you pay the bill, although by law they don’t have to.” Anderson is supporting two pieces of legislation under consideration in Congress: one would remove medical debt in collection from credit reports after the debt is fully paid or settled; the other would give a consumer 120 days to settle or dispute a medical debt with a debt collector before any adverse report is sent to a credit reporting agency.

Sometimes, regardless of how hard people try to resolve medical debts, bankruptcy remains the best option, or, as Anderson puts it, “losing the battle to win the war.” The authors of a recent study published in 

 analyzed a database of people who had received a cancer diagnosis in Washington state from 1995 to 2009 and found that they were “2.65 times more likely to go bankrupt than people without cancer.”

Bankruptcy may ruin your financial life, Anderson says, but bankruptcy isn’t the only thing that can ruin credit for years. Bankruptcy stays on credit reports for 10 years, but it can take seven years for a bad credit rating to be cleared, especially when the bills go to collection. Anderson cautions that credit agencies can sell unpaid debts to another collection agency, and then the seven years of bad credit starts over again. Personal bankruptcy avoids this action and can protect long-term assets, such as home equity and retirement funds.

People with cancer are sometimes reluctant to ask for help because they may not want to expose financial reserves, such as college and retirement funds. Rukavina tells them to face their biggest fears and ask themselves what they’re afraid of, and what they are afraid of losing.

“Weigh the money first, and understand where you are financially,” he says. “You have to be able to have an honest conversation. Sharing that information may be uncomfortable but necessary. Even ambulance companies will give people breaks.”

Editor’s Note: Bob Kail died on Nov. 26. 

Coping with cancer’s financial aftermath calls for creative solutions.

Debt Crisis: Coping with Cancer's Financial Aftermath

She was insured, thanks to a health policy taken out by her self-employed husband, who ran a small auto detailing business near Knoxville, Tenn. But the up-front deductible, before coverage kicked in, was $6,000. So Moody, who received her diagnosis in 2009 at age 61, worked the phones, hammering out payment plans and cobbling together a few thousand dollars before treatment could begin.

“It was very stressful, very tiring,” she says. “And my husband really couldn’t help me with it much. He had to work to pay for this. So it was all on me.”

At the same time that the costs of cancer drugs and other scientific advances continue to escalate, insurance policies are changing, leaving more patients, such as Moody, to foot larger chunks of the bill through deductibles or co-insurance. Increasingly, cancer physicians are discussing the risks that such financial stress can inflict on patients. A related term has recently emerged: financial toxicity.

Just as cancer drugs can exert toxic side effects, so can payment worries, says Yousuf Zafar, an assistant professor in the division of medical oncology at Duke Cancer Institute in Durham, N.C.

“What we are learning more and more is that the cost of treatment, even among insured patients, can cause financial toxicity,” says Zafar, who authored several publications earlier this year with Duke physician Amy Abernethy, highlighting the problem. “As a result of the costs from care, patients’ well-being can be impacted, and the quality of their care can be impacted, as well.”

One recent study, which looked at data from 284 Washington state patients with stage 3 colon cancer, found that 38 percent reported at least one significant treatment-related financial hardship. Among the treatment-related impacts cited: selling or refinancing their home, accumulating debt, borrowing money from loved ones or experiencing at least a 20 percent drop in income. Nearly all of the patients involved, 96 percent, were insured, points out Veena Shankaran, who helped author the study, published 2012 in the 

. “I have to say, it was surprising to see that degree of major financial hardship in this group,” says Shankaran, an assistant professor in the department of medicine’s oncology division at the University of Washington in Seattle.

Moreover, the financial ripple effects can linger long after treatment ends. The 2012 study found that, of the 23 percent of patients with medical debt, the average accrued debt for cancer care was $26,860. The vast majority of patients reporting debt—81 percent&mdash;were still carrying some of it more than a year after diagnosis.

What we are learning more and more is that the cost of treatment, even among insured patients, can cause financial toxicity.

Before Linda Moody could get surgery and radiation treatment for her stage 1 breast cancer, she became a master negotiator, dickering with doctors and hospital officials and nonprofit foundations.

Most patients, though, are reluctant to ask their doctors for help, according to findings that Zafar presented in June at the annual meeting of the American Society of Clinical Oncology (ASCO). The study, which surveyed 300 insured patients treated at Duke and affiliated clinics, found that 52 percent of them wanted to discuss treatment costs with their physician. But just 19 percent actually had done so. “Patients have this misconception that either they shouldn’t talk to their doctor about costs or that their doctor won’t be able to help them,” Zafar says.

Why? His survey identified some possible explanations: 28 percent said they wanted the best care regardless of price; 18 percent didn’t think their doctor could help; and 9 percent were embarrassed to raise the cost issue.

Financial strain cannot only erode patients’ wellbeing, but also their ability to fight the cancer, according to an earlier pilot study that Zafar also helped author, published in 2013 in The Oncologist. Zafar and his fellow researchers found that 46 percent of 254 patients surveyed cut back on food and clothing to afford treatment. Also to save money, 20 percent of patients took less than the prescribed amount of medication; 24 percent admitted to not filling some prescriptions.

Someone on the cancer treatment team, whether it’s a doctor or another clinician, needs to talk about money more directly, Shankaran says. “We can’t rely on our patients to report this side effect,” she says.

If money is a factor, it should be considered, particularly when there are two similarly effective approaches, Shankaran says. “We, right now, make recommendations about treatment in the absence of any consideration about cost.”

Moody describes a social worker’s assistance as crucial when she hit another financial roadblock after wrapping up surgery and radiation. Since her tumor was hormone-receptor positive, her doctor prescribed Arimidex (anastrozole), saying that she’d have to take it indefinitely to guard against cancer recurrence. Insurance didn’t cover any of the cost, which Moody recalls as $400-plus a month.

The social worker provided a list of nonprofit organizations to contact and Moody started phoning again. The nonprofit HealthWell Foundation was the third group she reached. The Gaithersburg, Md.-based organization paid for her medication until Moody became eligible for Medicare coverage.

Financial stress is so encompassing in terms of it touching so many aspects of one’s life.

Patients worried about affording care should raise their concern early in their treatment, Shankaran recommends. One approach: Ask the doctor if someone on the clinical team can walk them through what bills they should anticipate, as well as any financial resources that are available. “I think something as simple as that— it starts a conversation,” she says.

Zafar’s recent survey identified a ray of hope: 57 percent of patients who did discuss costs said the conversation led to a decrease in expenses.

Simply fretting at home is not a productive strategy, from either a practical or a mental health standpoint, says Barbara Andersen, a psychology professor at The Ohio State University in Columbus, who has studied stress and quality of life in people with cancer. One of her studies, published in 2004 in the journal 

, found that women with breast cancer were more likely to develop depressive symptoms if they experienced other non-cancer stresses, with financial difficulties leading that list.

“Financial stress is so encompassing in terms of it touching so many aspects of one’s life,” she says. Another difficulty is the sense of a loss of control. More than likely, a patient coping with chemotherapy and other treatments can’t magically generate a windfall of income, particularly if they’ve stopped working for a stretch.

But patients can regain some sense of control, and hopefully generate solutions, through a proactive problem-solving approach, Andersen says.

She recommends that patients first define their most pressing financial worry, whether it’s maxed-out credit cards or the possibility of losing their home, she says. Then, assess its impact, emotionally and physically. Finally, it’s time to start brainstorming, says Andersen, who recommends outlining thoughts and ideas in writing. Think of potential solutions, not just a couple, but 10 or more. “The more ideas, the more solutions a person can generate, the more likely it is that they’ll be able to find one or two or three to begin with,” she says.

Select the most promising idea and begin to break it down into executable parts. Keep writing, listing pros and cons, Andersen says. Ideally along the way, the overwhelming burden of financial worry gets broken down into more tangible and manageable components. “Stressors are more stressful if we think we cannot manage them,” she says.

Moody is still cancer-free and taking the hormone drug, which is now covered by Medicare. Only now does she admit that she stretched the medication early on, sometimes taking it every other day, when she was struggling to pay for it herself. Then one day her oncologist called her out, at least indirectly.

“I guess the doctor suspected, I don’t know—he threatened my life,” she says, laughing. “He said, ‘Some people, financially, they may kind of skip a dose. You wouldn’t do that now, would you?’”

Worrying about the cost of care can take an emotional toll.

Money Madness: The Emotional Burden of Paying for Cancer

It happens all too often—an insurer receives a claim for healthcare services and denies it, requiring the patient to either pay the cost out of pocket or challenge the denial. To avoid the time and energy involved in dealing with a claim denial, it is important to check with the physician practice or medical center to ensure that all tests and treatments ordered are authorized in advance and that the proper coding and eligibility are checked ahead of time.

But if all seems in order and service is still denied, the first step is to ask the insurer why the claim was denied. It may help to review the health plan and benefits that are covered, and obtain a letter from the physician explaining or justifying the care delivered.

The claim can be re-submitted along with the denial letter, a copy of the physician’s explanation of services and any other supporting documentation. It may be that the service or test in question required different coding, or a billing error needed correction.

It is possible that the claim may still be denied, but patients have the right to appeal, says Jen Flory, director of the Disability Rights Legal Center in Los Angeles. “If it was medically necessary, you are more likely to be successful, but you have the right to appeal regardless.”

The patient should formally appeal the denial to the insurance company, preferably in writing, a process known as an internal appeal. It may be helpful to contact the state insurance regulator to learn about laws regarding health insurance claims or the consumer services division of the specific state’s insurance department or commission.

A second-level internal review can also be requested—an appeal also conducted by the insurance company. At this level, more documentation is usually requested. But if this appeal is also denied, there are still other options.

“If the appeal is denied, then you should file an external appeal, if available,” Flory says. “We found out that a lot of people don’t realize that they have the option of making a formal appeal.”

Individuals who are not connected with the health plan conduct an independent external review. The Affordable Care Act stipulates that health insurance companies in every state must participate in external review processes that meet minimum consumer protection standards. External appeals generally must be filed within 60 days of the date of the insurance company’s final denial of claim, although some states may allow for a longer time period.

The Consumer Assistance Program can help patients file an appeal or a review (visit 

 and search for “consumer assistance program”).

What cancer patients need to know when an insurance claim is denied.

What To Do When Your Claim Is Denied

	Frequently, people with health issues, such as cancer, will fret about the sorts of questions that might be asked by well-meaning colleagues, says Stephanie Smith, a licensed clinical psychologist who practices near Denver. “How much do I want to reveal to folks? How much do I want to keep private? How many times can I answer the same questions? It becomes a huge stressor.”

	Smith frequently advises her patients to develop a short script before that first day—one that’s courteous but doesn’t invite further questioning.

	One such line: “Thank you so much for asking. I’m glad to be back to work.” Another possibility: “All of the support I’ve gotten has meant so much to me. I’m glad to be here.”

	With that script in a mental pocket, the employee hopefully doesn’t have to worry so much about a co-worker initiating an awkward conversation at the bathroom sink or in the hallway. It may even be possible to turn such a conversation into a more pleasant discussion, taking the focus off cancer and onto work performance or common goals.

	“They find it so exhausting to kind of dredge up all of this emotional stuff every time someone asks,” Smith says. “It’s almost like an armor, to give you a feeling of control.”

Returning to work after a cancer experience can ease income worries but can also expose other emotional issues.

Easing Return-to-Work Angst

To steer clear of the avoidance trap, she suggests patients join a cancer support group, which can provide an encouraging environment in which they can feel safe enough to open up and learn how others in similar circumstances have managed. “Talking about feelings is easier than talking about money,” Buzaglo says.

She says patients should begin by setting up a spreadsheet detailing the date of service, the provider, the amount owed and whether the amount is in dispute. They should also keep a log of phone calls and never throw away anything. Many hospitals and physicians bill separately, so they will need to be contacted separately. As bills and insurance statements arrive in the mail, Buzaglo recommends putting them immediately into one place, even if patients aren’t in a position at the moment to sort and organize. Never ignore them. If patients have a friend or family member who is contacting insurance companies or providers on their behalf, it may be necessary to fill out forms giving them formal permission to speak on their behalf.

, provides information about how the healthcare reform legislation will impact cancer care, applying for various forms of government assistance, co-pay support and foundation programs, as well as multiple community resources. Download the book or order a print version from the Cancer Support Community website (

“I tell people that if they work with me, I will work with them, but people are so embarrassed,” says Rosalind Roberts, a clinical financial specialist at the Siteman Cancer Center in St. Louis. “These are the kind of people who have never asked for any kind of help. “Don’t be embarrassed,” she adds. “It’s not a stigma.”

The first and most important step people can take in developing a financial plan that deals with the financial toxicity of cancer care is to deal with avoidance, says the Cancer Support Community’s Joanne Buzaglo.

Frequently, people with health issues, such as cancer, will fret about the sorts of questions that might be asked by well-meaning colleagues, says Stephanie Smith, a licensed clinical psychologist who practices near Denver. “How much do I want to reveal to folks? How much do I want to keep private? How many times can I answer the same questions? It becomes a huge stressor.”

Patients should have a plan on tackling medical debt.

Crafting a Financial Plan

Patients are now shouldering a higher burden of paying for their medical care. It happens at every corner—deductibles, high drug costs, larger bills from an increasing array of doctors, and stratospheric prices of tests, such as tissue assays and imaging studies. Fold in the complexity and intensity of cancer care, and the result is a convergence of costs that is often out of reach. This is what motivated 

We are conditioned to believe that the best care should be had at any cost. We expect that the most effective treatment and the latest and best technologies will always be recommended and preferred. This expectation is constantly reinforced by movies, TV shows and news headlines. However, as consumers of health care, patients need to not only be prepared, but to have a strategic plan to avoid “financial toxicity.”

We are conditioned to believe that the best care should be had at any cost. We expect that the most effective treatment and the latest and best technologies will always be recommended and preferred.

The good news is that the medical establishment, while partly responsible for spiraling costs, can also be part of the solution to the squeeze that many patients feel in their wallet. The key is to be proactive and honest when sticker shock hits. Patients may be surprised when their nurse or doctor volunteers an equally effective or a safe second option. Or when an administrator takes the time to clarify or waive an overzealous charge.

While high-tech tests and designer biologic drugs do account for much of the cost burden on patients, disruption of work and loss of income, as well as new daily living expenses are equally destabilizing. We believe that patients can protect themselves, to some extent, simply by being armed with knowledge ahead of time, knowing the factors that can lead to runaway costs, hearing enlightening personal stories and learning where there is room for negotiation.

This supplement is a “must read” for cancer patients and their loved ones who are in this together. We provide insights and tips that can help at different junctures of care, questions to ask ahead of time, and information on how to formulate alternate plans to treatment recommendations that may break the bank.

Patients should not have to travel the cancer journey alone, nor should they be passive about the costs that invariably accompany the voyage.

Supplement 2013 | CURE