IN JULY 2013, Cynthia Gathers made an appointment with a general surgeon to evaluate bumps that looked like pimples on her left cheek and shoulder. The McKenney, Virginia, resident had already been treated unsuccessfully by her primary care doctor and a dermatologist, and she wanted the bumps removed quickly before an August vacation to visit her family.
“My surgeon thought the pimples were cysts but sent them off for a biopsy anyway,” says Gathers, an associate minister at a Baptist church who also works for the Department of Social Services of Dinwiddie County, south of Richmond. “A few days later, he called me to tell me that the bumps were actually cancer and that I needed to see an oncologist right away.”
Gathers was diagnosed with stage IV non-Hodgkin lymphoma, a form of cancer that starts in immune cells called lymphocytes. For a month, Gathers received radiation treatments on her cheek and behind her ear, but new bumps formed on her chin. Her oncologist suggested she enroll in a clinical trial for Adcetris (brentuximab vedotin), a treatment delivered intravenously. The therapy put her cancer into remission but left her with extreme neuropathy—numbness, tingling and pain caused by nerve damage. During treatment she could barely walk without a cane and missed work because she was so sick. And while Gathers had health insurance through her employer, her coverage had a $4,000 deductible and copays for prescription drugs that added up to more than $1,800 a year. Facing a mortgage, utility bills, transportation costs and missed work for which she wasn’t paid, in May 2014, less than a year after her diagnosis, Gathers was $29,000 in debt.
“When you are sick in bed, the last thing you are thinking about is how to pay the bills,” says Gathers, who is 51 and lives alone with her cat, Deuce. Because she wasn’t sure what her health insurance covered and was having trouble keeping up with expenses, debt started piling up. Later, she learned she had incorrectly assumed responsibility for a $6,000 bone marrow biopsy because the bill was sent mistakenly to her instead of to her insurer. Debt collection agencies began to call. At the end of July 2014, Gathers filed for bankruptcy.
“I cried and cried, but then I just felt relief because the harassing phone calls and letters finally stopped,” says Gathers, who is undergoing chemotherapy again after a return of her lymphoma in January 2015. “I didn’t want to ruin my credit, but I had no choice.”
Cancer: An Expensive Undertaking
Gathers is one of more than 1.6 million Americans diagnosed annually with cancer, many of whom face not only the distress of a diagnosis, but a dizzying array of bills and crippling financial hardship. While treatment costs vary depending on the type of cancer, some therapies approved recently by the U.S. Food and Drug Administration (FDA) come with a big price tag. For example, an immunotherapy drug used to treat a rare form of leukemia costs at least $64,000 per infusion and requires two courses of treatment. The National Cancer Institute (NCI) estimated that for those 65 and older, the cost of the first year of leukemia treatment averaged $33,167 for women and $36,036 for men in 2010, the most recent year for which data are available. Overall, the annual cost of cancer care to the U.S. economy was nearly $125 billion in 2010, and that figure could grow as much as 66 percent, to nearly $207 billion, by 2020, according to the NCI.
The majority of Americans diagnosed with cancer have health insurance to help cover treatment expenses, but out-of-pocket costs can put a big strain on finances. About 80 percent of employer-based insurance plans compel employees to pay out-of-pocket deductibles for drugs and medical services before they are reimbursed, and the average annual deductible is $1,200, according to a 2014 survey by the Kaiser Family Foundation, a nonprofit health think tank. Individuals who purchased a “silver plan” on the Affordable Care Act (ACA) marketplaces in 2015—about two-thirds of enrollees did in 2014—will have an average annual deductible of nearly $2,700, according to an analysis by Avalere, a health care consulting firm. Coinsurance and copays can add thousands of dollars more to a medical tab.
Those deductibles are beyond many people’s means. About 52 percent of Americans would be unable to pay for a hypothetical emergency, like a medical expense, costing $400, without selling something or borrowing money, according to a July 2014 Federal Reserve survey of Americans’ economic well-being. Bankruptcy rates are almost twice as high for cancer patients as for the general population, according to a 2011 study published by the Fred Hutchinson Cancer Research Center in Seattle.
“Having cancer can be an expensive undertaking even with insurance,” says Karen Pollitz, a senior fellow at the Kaiser Family Foundation who is also a breast cancer survivor.
The ACA attempted to address the affordability of care by banning insurers from denying coverage to people with pre-existing conditions like cancer and by eliminating insurers’ annual and lifetime limits on benefits. It also imposed a cap on patients’ cost sharing. The annual ceiling for medical costs for essential benefits like doctors’ office visits and hospital care is $6,600 for individuals and $13,200 for families. But the cap applies only to in-network services covered by an insurer, not to out-of-network fees. An insurer can charge more for these out-of-network services. Some insurance plans also have a separate deductible and out-of-pocket cap for prescription drugs.
“All these costs mean that people are having to make trade-offs to keep up with their care,” says Joanne Buzaglo, senior vice president of research and training at Cancer Support Community (CSC), a nonprofit focused on meeting the emotional and social needs of cancer patients.
CSC published a 2014 report showing that to pay for their cancer treatments, 48 percent of patients put off vacations and social events, 37 percent cut back on groceries, 36 percent depleted their savings and 24 percent borrowed against their retirement plans. About 37 percent of cancer patients were seriously concerned about bankrupting their family, according to another survey published by CSC in March 2015.
Those who qualify for insurance through Medicare or Medicaid stand a better chance of receiving affordable care. Depending on the state in which they live, Medicaid beneficiaries pay nominal premiums, deductibles, coinsurance and copays, but they may have to pay as much as 20 percent of the price of prescription drugs not on a preferred medications list. Medicare covers most health care costs, but it still requires patients to pay for some expenses, particularly for prescription drugs. Medicare beneficiaries pay as much as $4,700 out of pocket for prescription drugs before the program starts picking up 95 percent of drug expenses.
Five Steps to Control Cancer Costs
Keep a firm grip on your finances during treatment.
A cancer diagnosis can be overwhelming, but it’s vital to keep a firm grip on your finances. These five steps can help you manage the financial costs of cancer.
1. Find out if your cancer center has a staff member who is a financial navigator. A navigator can help you decipher the complexities of your health care bills and understand what your health insurance covers.
2. Understand your health insurance and appeals process. Read your health insurance policy and review the formulary—the list of prescription drugs covered by your plan. Learn about your insurer’s appeals process. The Affordable Care Act (ACA) requires beneficiaries to appeal a decision within six months of receiving a notice that a claim was denied. Some insurers may require that an appeal be filed in less than six months.
- The ACA website offers assistance in understanding the insurance appeals process.
- The American Cancer Society can help if you are uninsured or need guidance to understand your insurance.
- The Cancer Insurance Checklist, an online resource funded by patient advocacy and health care groups, helps consumers compare cancer-related health plan costs so they can pick the best health insurance coverage offered through ACA state exchanges.
- The National Cancer Legal Services Network promotes free legal services to help people affected by cancer.
- The National Coalition for Cancer Survivorship has compiled information to help survivors understand and navigate their insurance options under the ACA.
3. Talk with your doctor. Not all doctors know if the recommended treatment will cause financial hardship, so speak up and ask them what the costs will be. “A doctor should be able to talk to you about whether a treatment plan is going to cause a financial burden, because that has an impact on [your] quality of life,” says medical oncologist Jonas de Souza of the University of Chicago School of Medicine.
- Cancer Support Community offers a webinar and an e-book with questions to ask your doctor about treatment costs.
4. Get help managing bills. Consider asking a trusted friend, family member, neighbor or financial counselor to help you manage your bills.
- CancerCare recently held a briefing on managing cancer costs.
- The Cancer Financial Assistance Coalition helps cancer patients find financial support from local and national sources.
- State Consumer Assistance Programs, established by the ACA in many states, can help consumers with health insurance problems.
- State Health Insurance Assistance Programs offer one-on-one insurance counseling to people with Medicare and their families.
5. Seek out financial assistance. Check out these online resources to learn about getting help with expenses.
- American Cancer Society.
- Healthcare.gov, the website for the ACA, provides cost-sharing support for those who bought silver plans on a health exchange.
- Partnership for Prescription Assistance.
- Patient Advocate Foundation Co-Pay Relief Program.
Help Is Available
Gathers accepted contributions from friends and members of her church to help pay her bills, but she didn’t know about organizations that offer financial relief to cancer patients. Then, in February 2015, she faced an electric bill of more than $300 that she couldn’t pay. Gathers called her utility to plead for a reprieve before she fell deeper in debt. “The person I talked to couldn’t do anything about my bill, but he did suggest I call the American Cancer Society,” she says. “He told me there are programs out there for cancer patients that can help with expenses.”
That call led her to the Leukemia & Lymphoma Society (LLS), which provides emotional and financial support to patients. LLS enrolled Gathers in its copay assistance program. Other patient advocacy organizations like CancerCare and the Patient Advocacy Network, as well as local churches and foundations, helped her pay utility and transportation bills.
“I am hopeful that getting help like this will get me to the point where I can regain control of my finances,” Gathers says.
Pat Killingsworth also got help through LLS. Killingsworth was a St. Croix Falls, Wisconsin, real estate developer when he was diagnosed with stage II multiple myeloma in 2007. He learned about LLS in 2009 and qualified for copay assistance.
“The first thing that I’d tell anyone who is diagnosed with cancer is to pound the Web and try to find sources for financial aid,” says Killingsworth, who wrote the book Financial Aid for Myeloma Patients and Caregivers. Killingsworth now lives on Amelia Island in Florida and writes a blog on living with multiple myeloma.
Dan Sherman, a clinical financial consultant at Mercy Health Lacks Cancer Center in Grand Rapids, Michigan, encourages patients to approach patient support organizations for financial assistance if they offer it.
“Many patients don’t apply for [financial] help because they think they won’t qualify, but many of these programs are liberal with [asset and income] qualifications,” says Sherman, who owns NaVectis Group, a consulting company that trains health care professionals to understand health insurance plans, to teach patients about their coverage, and to help them learn about financial aid.
Sherman suggests that cancer patients become familiar with their health insurance plan and understand their deductibles, copays and coinsurance. He also advises patients to learn how their plan’s in-network and out-of-network reimbursements work.
“It’s easy to stray out of network,” says Pollitz of the Kaiser Family Foundation, who had breast cancer three times. She recalled that during one of her surgeries, the hospital, without her knowledge, employed an out-of-network pathologist. The insurer initially charged her more than the in-network rate for the service until she explained to them what had happened. Pollitz advises patients to call their insurers to explain their medical situation and try to find a health insurance consumer assistance program in their state. She also says it’s important for cancer patients to recruit a trusted family member, friend, neighbor or financial counselor to help them stay on top of bills.
“Friends always want to do something to help, so enlist one of them to help you sort through those bills,” she says.
Bill Eby, a freelance media communications consultant based in Austin, Texas, was diagnosed with stage III squamous cell carcinoma of the head and neck in May 2014. Eby had an individual insurance plan but was facing out-of-pocket costs of about $15,000. Fortunately, he had friends he could count on.
“I only make about $35,000 after taxes, business expenses and insurance premiums, and I couldn’t work for a few months, so [the costs were] a big chunk of my income,” says Eby, who had a bout with prostate cancer 20 years earlier. He asked a friend to talk to his insurer and doctors about setting up an extended payment plan. The same friend also created a donation fund through giveforward.com. Ultimately, the fund raised $25,000, which Eby used to defray the costs of care and make up for lost income while recovering.
“The [fund] made me uncomfortable, but I can’t deny that I felt lucky to have friends who obviously think a lot of me,” says Eby, who has been in remission since the end of 2014. “It meant money was something I didn’t have to worry about. It was lifesaving.”
Gastrointestinal oncologist Yousuf Zafar of the Duke Cancer Institute in Durham, North Carolina, also suggests talking to your doctor. He encourages his patients to discuss medical expenses with him and helps them find financial counselors, pharmacists and social workers who can help.
“Around 2009, I started noticing that patients were asking me for less frequent visits and about less expensive drugs,” says Zafar. “My colleagues and I decided to do a study on how financial costs were affecting patients, and we found that 46 percent of them were cutting back on basics like food and clothing to pay for their care. Some were skipping their medication to save money.”
Zafar and others at Duke are developing a Web-based tool to teach patients how to talk about financial concerns with their doctors, educate them about potential financial resources and identify whether they are at risk of accumulating too much debt. They eventually hope to make the tool available nationally. Cancer Support Community offers a counseling program where patients can learn how to talk to their doctors about treatment decisions and become familiar with the types of questions they should ask.
“Across the country, I’ve been talking to many oncologists about this financial toxicity,” Zafar says. “I really think that they are starting to understand this is a growing problem for our patients.”
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