Cancer survivors who feel buried by costs during and after treatment can reach out to resources for help.
After undergoing chemotherapy and multiple surgeries between 2010 and 2011 to treat stage 3 testicular cancer, Chad Barlan thought the worst was behind him — that is, until the medical bills poured in and the debt collectors started calling. The then-31-year-old single father from Buford, Georgia, was shell-shocked to discover he owed more than $80,000 to the various centers and doctors who treated him. “I chose a basic insurance policy because it was the most affordable.
I was young and fit at the time and never imagined how quickly my situation would change,” says Barlan.
Medical bills were only partly to blame for Barlan’s financial woes. The treatments, plus harsh side effects that sent him to the hospital, meant lots of missed workdays from his job with a lawn care company. Eventually, Barlan went on disability. When his employer terminated him, Barlan lost both his paycheck and his health insurance.
Even after he was in remission, Barlan struggled to return to work and pay his bills. “I entered a dark place of depression and anxiety. It took about six months before I felt physically and mentally strong enough to seek employment again,” he recalls. During that time, the past-due notices and collection agency calls didn’t stop. At one point, Barlan considered filing for bankruptcy. “I felt like a horrible human being for not being able to repay the people who worked so hard to save my life,” he says. “I wanted to do my part, but I simply didn’t have the financial means at that time.”
CANCER + DEBT = FINANCIAL TOXICITY
Barlan’s situation is not unique. Up to a third of survivors say they incurred significant debt while undergoing treatment; half of them accumulated debt of $10,000 or more. A 2016 study conducted by the Fred Hutchinson Cancer Research Center in Seattle found that people are 2.5 times more likely to file for bankruptcy following a cancer diagnosis. What’s more, these bankrupt patients are nearly 80% more likely to succumb to their disease. There’s even a name for this phenomenon: financial toxicity. “The psychological and emotional stress of accumulating so much debt while struggling to afford critical medical treatments, as well as cover basic needs, is incredibly harmful — that’s financial toxicity,” says Salene Jones, a clinical psychologist and a member of the Fred Hutch public health sciences division.
Depending on the cancer type, severity and associated treatments, costs for care vary wildly, with patients quickly racking up tens to hundreds of thousands of dollars of debt. It’s a crisis bordering on a national emergency, says William Goeren, a licensed clinical oncology social worker and director of clinical programs for CancerCare, the leading national nonprofit organization dedicated to providing free, professional support services that helps people manage the emotional, practical and financial challenges of cancer. “As cancer treatments continue to advance and become more specialized, their costs have significantly increased,” he says. The average monthly cost for some novel cancer treatments, such as immunotherapy, has more than doubled over the past decade to $10,000 per treatment.
Insurance costs are also on the rise. A recent nationwide survey conducted by the Kaiser Family Foundation (KFF) and the Los Angeles Times found that annual deductibles for job-based health plans nearly quadrupled over the past decade to $1,350 per family member. At the same time, insurance premiums rose at more than double the rate of inflation. To manage costs, health insurers have started charging higher premiums and passing costs onto patients who pay more out of pocket for deductibles, copayments, coinsurance and other expenses. “Insurance policies today offer less coverage at higher costs, which puts the onus back on people who are already struggling with the emotional and physical toll of a cancer diagnosis,” says Goeren. “It’s a double whammy.”
In 2014, Hanover, Pennsylvania, resident Melanie Thompson underwent multiple rounds of radiation and chemotherapy — at a cost of $10,000 to $15,000 per treatment — for inoperable stage 4 squamous cell carcinoma of the tonsil that continued into the following year. Even after meeting her nearly $7,000 deductible, Thompson was on the hook for 10% of the treatment costs, which quickly added up to thousands of dollars.
At a time when Thompson needed the money most, she was unable to keep up with the demands of her job and forced to resign.
Then there are the additional hits that pile on debt, such as travel and hotel expenses and items like medical equipment, altered clothing, wigs and cosmetics. Half of the KFF survey respondents said that, due to lack of money, they delayed or skipped medical care or elected not to fill a prescription — decisions that diminish treatment success and jeopardize survival. Not surprisingly, people with cancer and other serious, chronic medical conditions, such as heart disease and diabetes, are the most financially strapped among the ill. “Thanks to new therapies, people with cancer are living longer, fuller lives. The downside is that they are left with treatment-related debt that can be difficult if not impossible to dig out from under,” says Goeren.
Samantha Watson learned at a young age about the crippling effects of cancer-related debt. In 1999, as a 21-year-old college student, she received a Ewing sarcoma diagnosis. After undergoing a bone marrow transplant, Watson was slapped with a $275,000 medical bill. It took two years of legal wrangling with the insurance company to get the charges reduced to a more affordable amount. “Cancer and money are two taboo topics,” says Watson. “Unfortunately, if you or a loved one receives a cancer diagnosis, you’re going to have to talk about both.” Watson applied what she learned from dealing with her own medical debt to found The Samfund, which is a program of the Expect Miracles Foundation and provides grants and online finance educational seminars to young adults recovering from the financial impact of cancer treatments. “Young adults don’t have savings to tap into and often choose the most minimal insurance policy, if they have coverage at all,” says Watson, managing director of stewardship at Expect Miracles Foundation. “They’re also more likely to still be weighed down with student loans.”
Of course, financial toxicity can be devastating at any age. A 2016 Cancer Medicine study conducted by The Samfund found that “patients experiencing financial hardships may struggle with impossible decisions about which bills to pay and which to skip, whether to risk going without insurance or medications or declare bankruptcy instead.” A 2017 CancerCare
survey found that half of respondents faced with medical debt cut back on essentials like food and clothing, and nearly one-third were unable to pay bills for essentials like rent and utilities. In an attempt to stay solvent, a third of the respondents resorted to borrowing money from family or friends, and an equal amount applied for financial assistance from nonprofit organizations. In the KFF survey, 20% of participants reached for a credit card to pay medical bills, a decision that exacerbates the problem by tacking on high monthly interest charges. An increasing number of people faced with insurmountable debt are turning to crowdfunding sites like GoFundMe to alleviate some of the financial stress.
Thompson tapped a combination of resources to pay her medical bills and living expenses. Family and friends held a motorcycle charity drive and silent auction, as well as an online crowdfunding effort. Grants from nonprofit organizations helped cover utility bills. “It makes me sad — and a bit angry — that people like me who have always worked hard and lived responsibly have to resort to asking family, friends and strangers to chip in so that I can have food, shelter and appropriate medical care,” she says. “Cancer is horrific enough without these added stressors.”
RESOURCES TO LEAN ON
In a perfect scenario, each of us would have an emergencysavings fund to cover a crisis. In reality, just half of single people and 60% of families have even $2,000 in savings, including cash, non-retirement funds and other liquid assets, according to the KFF study. In a different report from 2015, nearly half of Americans said they would have to sell something or borrow money to pay a $400 unexpected medical bill.
Thompson quickly depleted her family’s savings during her first year of treatment. Nearly five years after her diagnosis, she still shells out close to $30,000 a year to cover medications, follow-up scans, ongoing treatments and insurance deductibles. “I can never get ahead,” she says.
For those who find themselves drowning in medical-related debt, these steps can help:
- Tap into all available resources. Talk with a social worker at your treatment center. “An oncology social worker can connect you with local and national resources that provide services or financial assistance,” Goeren says. A social worker can also help with mental health services to address cancer – or debt-induced depression or anxiety. Some organizations to check out:
- CancerCare’s (CancerCare.org) financial assistance program provided more than $41 million in aid in 2018 to help over 25,000 people with treatment-related costs such as transportation, home care, child care and copayments. Contact CancerCare by phone at 800-813- 4673 or email firstname.lastname@example.org.
- The Samfund (thesamfund.org) offers grants for essential expenses, such as rent, groceries, insurance and car payments, to people ages 21 to 39. The organization has partnered with Triage Cancer to provide an online toolkit, available at CancerFinances.org, for people navigating financial hurdles during and after a cancer diagnosis. To reach The Samfund directly, call 617-938-3484.
- The Patient Advocate Foundation (PatientAdvocate.org) helps people negotiate affordable access to medical care and provides arbitration and mediation to address medical debt and job retention. The organization also offers financial assistance for treatments and prescription copayments. Contact them by phone 800-532-5274 or email email@example.com
- The American Cancer Society (cancer.org) has tips and resources for paying high medical bills and daily expenses and can be reached at 800-227-2345.
- LegalHealth (legalhealth.org) provides free individual consultations, advice and counseling in New York City hospital based clinics for patients struggling with legal issues. For information about our clinics visit our website at http://legalhealth.org/schedule/.
- Talk to the billing department. You may be able to negotiate a reduced bill or set up a monthly payment plan with your treatment center or doctor’s office.
- Be direct with your doctor. Tell your provider that treatment costs are an issue. You may be able to get an equally effective but less costly option. You also may be able to skip or spread out certain follow-up tests or procedures if your doctor recommends doing so. Your physician is also in a position to know more about drug discounts and clinical trials. Thompson’s oncologist went to bat for her and secured a reduced rate with the company making the chemotherapy.
- Reach out to big pharma. Many pharmaceutical companies, as well as medical device companies, offer products at reduced prices through patient assistance programs.
With the help of a Samfund grant, Barlan returned to school, earned some certifications and started his own business. In 2016, he paid off everyone involved with his initial cancer treatments, but medical bills for treatment-related complications and follow-up scans remain an everyday reality. “I’ll always be grateful for the support of family, friends, organizations like The Samfund and even strangers who helped carry me when I couldn’t manage everything on my own,” he says.